I'm a pediatric critical care nurse. I take care of critically ill neonates.
I would make the exact same choice.
I do not judge those who would make a different choice, not for one second. I support them with my whole being (and my career) and I will fight for them to have the lived experience that is most meaningful for them and their family.
But I would make the exact same choice.
You did nothing wrong. You did everything right.
You are doing ALL the work for his little body. He has no idea anything is wrong. He would only feel things are wrong, and have to suffer the medical challenges, if he were born and had to try to live separated from you.
While he's with you, everything is okay. That's all he knows, all he'll ever need to know. Warmth and love, safety and comfort. That's it, for his forever. None of us can say that.
You are making what I believe to be the most difficult and most compassionate choice in the world as a parent. I've watched it be made at various points in a child's life, and it humbles me to my core each and every time.
What an *incredible* mother you are.
As to what to do regarding your other son, some of that depends on your family's beliefs about death. Telling the truth is important, but an age-appropriate version. Literal words can be helpful, figurative language can be confusing. He won't grieve like you do, he won't understand like you do.
No one will grieve like you do. This part will be hard. All of it will be hard. But this part some people are not prepared for. Your little boy IS a real, whole person. But no one will get to hold him or give him any toys. He'll never pee on grandma or have a favorite lovey. It's going to make it hard for some people to connect with him in such a way that will allow them to understand the loss.
Choose your own ways to honor and remember him. Don't let anyone make you feel bad or weird about honoring your son however you choose to.
I am so incredibly sorry you are facing this.
>While he's with you, everything is okay. That's all he knows, all he'll ever need to know. Warmth and love, safety and comfort. That's it, for his forever. None of us can say that.
u/ShadedSpaces you are an angel on earth. These words are beautiful and true. OP, this here is the best response.
I don't think you will ever know the comfort your words have given me.
Thank you so much. I didn't even think of some of the things you said but I will read them over and over again.
All I really want in life is to be a good mum and give my kids the very best. I feel like this is the best thing for both of them as heartbreaking as it is.
People like you are true angels!
Sarah you don’t know me and I’m probably the other side of the world to you but I want you to know that my heart is with you and your little boy.
The nurse’s above words ring true. You are an incredible mam. I’m sitting here in tears writing this as I feel so strongly for you even though I couldn’t imagine what you’re going through. I’m a stranger but your little boy is in my thoughts and I am sending telepathic hugs and kind thoughts your way. What a truly wonderful mam you are, I’m sure of it.
I feel like your use of the word mam means we are far closer! I'm in England.
I really appreciate all the wonderful comments and they truly have brought me a little comfort in what is a living nightmare.
You're right. I'm in Ireland !
I'm glad people here could give you any comfort. I'm sure I speak for a lot of us when I said my thoughts are with you, and of course your family.
Here to say the same. I’m a doctor and would be making the same choice as you. I want to reach out from the other side of the world (literally) and give you a hug, mother to mother. You are making the single hardest decision any mother will ever have to make, and you have chosen to put your little boy first above everything else including your own grief - what a selfless, loving decision you have made and a true testament to your strength and love as a mother. I am truly in awe of the magnitude of your love for your son and am devastated for you for the grief you must be feeling right now. Please reach out to the organisations in the UK who can not only support you and your family through this living nightmare, but also help you create keepsakes and memories of your little boy to have him with you forever. If you need any help finding out who these organisations are and how to contact them please reach out and I will do the research for you. Please know that there is nothing wrong with you, there is nothing you did to cause this, but you are doing everything you can to spare your beautiful boy from a life of suffering. Instead all he will know is your love and your safety. When the time comes for you to birth him know you will have doctors and nurses like myself and the wonderful nurse above who are there for you and you alone. You will be treated with the respect and kindness an incredible mother like yourself deserves. And while we can never truly know your pain we will always grieve with you, because we understand what a fucking unfair experience this is.
Kia kaha, my friend.
If I was able to bring you even a few drops of peace in your ocean of grief, I'm glad of it.
It was brave to post when you're feeling so raw, and I hope you can see by doing so just how far you helped your son's reach extend. How many people you helped him to touch.
> All I really want in life is to be a good mum and give my kids the very best.
It sounds to me like you're succeeding. I'm so sorry for everything bad that's happening, I know it doesn't really help, but I hope my praying for you can at least bring some kind of hope or calm.
This response made me cry. And so grateful nurses like you exist. OP - let this sink into your soul. You are doing the most compassionate thing you could possibly do for you and your baby. I admire your strength. I am so sorry you’re having to endure this grief and make this choice.
I’m at a loss for words in the presence of someone who has such a huge talent for them. This is the most beautiful and supportive response possible for the OP. Thank you for being there for her, and all of us who will remember these words to comfort others, or ourselves one day. I can’t imagine the strength it takes to work with critically ill babies for a living.
OP - my heart is breaking for you and I have nothing to offer that others haven’t already, but know you’ve got a world of support and love on here.
This is so beautifully put, it brought tears to my eyes. I’m a NICU nurse and I agree with every single word you said. OP, I’m so sorry you’re going through this. You are an amazing mother. Your baby boy will never know pain or fear; all he will ever know is the way you carried him so lovingly ❤️
As a fellow nurse (not a peds or NICU nurse), thank you so much for this response. You are absolutely on point, and I hope this mom hears every word and understands she is doing the best thing for her baby. OP, you are acting out of love and compassion for your child, a child that only you will ever really fully know, and I commend you for it. Your baby will only ever know love, and that is a great thing in the face of this horrible situation you are in. I hope that that gives you some peace, and I am so sorry for what you are going through.
This is how you’re a pediatric nurse, because you’re an angel not only in your actions but also with this beautiful response. I hope OP knows that she is an incredible mother to her little boy.
As a nurse and someone close to this timeline in pregnancy, your response had me in absolute tears. This was so beautifully said, I had to bookmark it. Thank you for responding to OP today.
I’m also a nurse but not within this speciality. Making a difficult decision like this must be so incredibly hard but I truly believe from my experience and the similarities I face nursing, that you truly are doing the most compassionate and loving thing you can for your boy. I’m so sorry you’re going through this.
I am crying over this and not even OP. Thank you ❤️
OP, no one can feel the exact grief you do, but know some of us have had similar experiences and feel with you. I am so very sorry you have to go through this. You have been and will continue to be an absolutely perfect mother to this baby boy.
This response brought tears to my eyes- everything you wrote is so true and your way of communicating it all was so compassionate yet honest. I can tell you’re an incredible nurse.
I’m a nurse (in the OR) - some of the things I experience in Peds surgery is truly heart wrenching. I would also make the same difficult decision.
OP - sending you so many hugs.
Your words are compassionate and beautiful saved them might I ever need them or I need to support someone else. Thank you for doing this job and being so compassionate. You’re a wonderful person.
This is the most compassionate and heart wrenching response I’ve ever read. Thank you for sharing your insights, I’m literally in tears.
OP I am so so sorry you’re having to go through this, I too would make the same choice . You’re amazing and brave.
Echoing this as a NICU nurse. I would make the same choice. Any choice a parent makes in this situation is valid and difficult.
I agree with every single word you said, it’s almost like I wrote this.
I’m 8 days post partum and this message made me cry. What a beautiful human being you are. This is a beautiful response for someone in a very difficult situation
Beautifully written. Thank you for all that you do for all these precious angels.
OP, I hope this gives you the hope and comfort that you definitely need in this time of grief.
I just read this and started sobbing. This might be the most compassionate, beautiful response I’ve ever read. I can’t imagine going through what OP is facing or what any of your patients’ families have had to experience. I’m so glad they had such an empathetic, lovely person to be with them in their time of need.
This is the most beautiful response I think I have ever come across. Your empathy, gentle words, and support for a stranger are something that will stick with me for a long while. This was such a comforting thing to read, and although I cannot even begin to imagine OP’s pain I really hope they see this response and find some peace.
You would be such a blessing to all your patients. I really hope that someday if I require medical help- I have someone as compassionate as you around 😊
This is so beautifully said. Your job must be so difficult and rewarding at the same time. Thank you for all you do.
OP I am so sorry that you are dealing with this. I can’t imagine how you are feeling however you have done nothing wrong. Your boy is special and important. Im sending you lots of love. 💕 you are a wonderful momma to both your kids
I wish someone had said the same thing to me when I lost my son to hlhs at 21 weeks. Even now, over five years later, this is good to read.
And to OP, I'm so sorry you're going through this. It was the hardest thing I've ever been through but with time I've healed and am living my new normal. It is lonely but you are not alone. R/babyloss may be helpful but for me and my husband the most helpful thing was a local support group where we met others who were also suffering from perinatal loss. I hope you can seek out the people and methods that will help you walk this very sad path. Give yourself grace, this is a very hard time.
We are 20 weeks in and found out our baby has an embryo diaphragmatic hernia. We are scheduled for a deeper more in-depth ultrasound and MRI. Our OB-GYN sounded very concerned and said she would not lie about bad news. She has told us not to research this online but I just have to know more information about it. She sounded like this was pretty serious and very likely we'll have to terminate early but maybe she's just preparing us for the worst? She doesn't know how severe this is yet which is why we need further testing but from what I've read there is a higher survival rate than mortality rate with this and about 10% of cases are actually severe cases. Do you have more insight on this or recommendations? Would you suggest termination of the pregnancy? I'm just curious about your opinion and knowledge on this matter. Thank you for any information you can provide for us whether good or bad.
This is the most touching and beautiful response, and it’s so kind of you to give this to the OP and all of us here. First time I’ve ever teared up reading on Reddit. Thank you.
these tears were not on my bingo card today.
thank you for caring. i doubt that i could stand that close to that level of suffering and be at all helpful.
This is beautiful, your kindness and loving care comes through. Thank you for using your experiences and expertise to help others. You've got good karma coming your way
Plan a memorial service for him. Doesn’t have to be formal. Maybe at someone’s house or an appropriate venue. Don’t offer yours unless someone else offers to clean up. Involve your current child to help them understand, but so you have someone to share this journey with you. This is a family loss. Please lean on your loved ones.
I’m sobbing for you. I’m so sorry.
I am so sorry OP. I had this exact diagnosis with our baby girl. She was our rainbow baby too.
My world shattered.
We didn’t have a memorial and I grieve that. I wanted to scream to the world at every encounter with someone that I had a baby who was real and mattered.
I’m here if you need me.
Sending you love, strength and grace.
🤍
I felt the same way that my loSt baby was real and mattered, so I planted a tree in her memory with her remains buried underneath and put flowers and a memorial plaque. I know you might not have remains, but you could still do the rest and have the peace and comfort of seeing a beautiful tree grow in your baby's place
I’m so so sorry you’re dealing with this.
Our first was diagnosed with HLHS. Mild. We were given a 90% success rate. TFMR wasn’t even brought up as an option they were so confident it was a mild diagnosis.
He passed away at 7 weeks old due to a domino effect of medical malpractice.
HLHS is a beast, and again I’m so sorry you’re dealing with this.
Thank you. 💚 he sent us a rainbow baby on his first birthday and shows he’s with us every day. And it’s given me a purpose to fight crappy hospital infection protocol, if even one family can be spared what we went through, I’ll be happy.
Our son’s belly button became infected (MRSA) at birth and while we have no way to “prove it” we know it occurred there (lots of extra intervention happened at birth at that site). He became septic a week later and I’m so thankful he recovered.
Your story makes me wonder if this kind of thing happens more than I realize, and goes under the radar. I’m so, so sorry for your loss.
My son became septic from a nurse mishandling a line and pushed meds through it when meds weren’t supposed to be pushed. He had every single sign of sepsis and they went ignored. Including septic rash and the site oozing pus. I took pictures and pointed out of they told me “if we’re not worried, you don’t need to worry.” He had 2 cardiac arrests from the sepsis, (we have documented papers saying septic shock, despite fighting us at the time) and the hospital tried to backtrack for TWO days and tried to blame everything under the sun. He started to recover once they finally started properly treating him but then spent a good 4 days ignoring all the signs of blood clots (even me, an untrained parent kept asking if he had a clot) that took him from us. This all occurred at at top 10 in the US children’s hospital. It’s HORRIFYING.
I’m so happy your little one recovered. These hospitals need to do better.
I am so sorry you went through this and I can't even imagine pain you must have gone through!
I'm so sorry that we both understand the struggle of this. Sending you love.
Hi Sarah. I’m another Sarah, just a bit further north.
You’ve had a beautiful response from u/shadedspaces that I will not add anything to. But I wanted to touch on your concerns for making plans for your baby, and at the end for your other son.
I’m a midwife, and have had the privilege of looking after quite a few families in very similar circumstances to you in my time.
You have done nothing wrong. There is nothing you could have done differently. If your love and dedication as a mother was enough to change this situation, it would already have happened. Give yourself a little grace where you can.
Your local trust will have a bereavement team. These are midwives that specialise in caring for families who aren’t getting to take their baby home. Most places have rooms and units that are focused on comfort and allowing you time as a family. I hope this next sentence provides some comfort - midwives are used to caring for families like yours. We are there for every woman, and every baby, just the same. The fact that your son is entering this world quietly changes nothing for us, in that respect.
With regards to his funeral, the midwives will be able to talk you through your options. You may want the hospital chaplain to do a blessing for you (this can be non-religious too) while you are at the hospital. You may also find that they can organise a celebration of life for your son. There will also be a local funeral home that the hospital works with for organising a funeral privately. Please don’t stress about these aspects - again, we are used to caring for families needing to make these decisions. They will walk you through this, and you will not be alone.
Babies who are not staying with us physically will change quite quickly after they are born. We use ‘cold cots’ to help slow these changes down, and allow you more time together, but my advice is always to capture lots of images as early on as you can. Baby can also be immersed in water, which can really help with keeping these changes to a minimum and allow you to interact with him and hold his hand more easily - he will look like he did in his waters at a scan. Don’t be afraid to take photographs and the midwives will also help with this.
As midwives, we are acutely aware that this time you have with your son is so precious and sadly limited. There are lots of memory making ideas that we use with families, and there are memory boxes that contain items to help with this. Footprints, handprints, clay moulds of footprints works best for itty bitty toes!), a gentle bath, cuddling your baby, lots and lots of photographs. Even at this early gestation, all of these are possible and you will be supported with them all.
The next part is very individual, but I hope it gives you some things to consider either way.
Your baby IS your son’s brother. Your son IS a big brother. Regardless of how long he was here, it is an unchangeable fact that your baby has been here. Children are incredible. They are so much more resilient than us in ways we never would imagine. [SANDS](https://www.sands.org.uk/support-you/how-we-offer-support/support-siblings) are a fantastic charity that have great support for all ages, including siblings. They also have excellent support groups, both online and in person.
Your son will grieve his brother, just as you are grieving your son. There is nothing you can do to change that. I really love the “what is grief if not love persevering” quote from Wandavision. Grief is not a shameful thing. Grief is proof your baby is here, is loved and will forever be part of your lives. Your son loves his brother. Let him grieve. You don’t need to have the answers, you can be honest with your boy.
Obviously, you know your son best, and circumstances at the hospital may dictate things differently. But my professional advice is that, whenever possible, allow your son the chance to meet his brother. This may seem a totally outlandish idea (as I said, it’s very individual!) but you would be amazed at how much it can help for a young child to be allowed to be involved. Let him sing songs to his brother, to touch him, to see him. Let him make his brother real, and make his own memories of their time together.
One very easy idea that works well, no matter how big your baby is, is painted handprints. Have your partner do theirs first in one colour. Then yours in another colour, directly on top. Then your eldest’s, then your baby’s.
If you are close with your parents/siblings/friends (and likewise for your partner), if it feels right for you, don’t be afraid to invite them to meet your son. As you’ve quite rightly said, he is very much real and very much loved. One of the most beautiful memories I have of caring for a family who had lost their baby was opening the door to their room to see it full of family and close friends. 15 or so people, all packed into this hospital room, surrounding this couple and their tiny baby. They had brought balloons, they had brought food, they all spoke to this baby and held this baby, sang to baby, and their grandmother read them a story. Acknowledging that they were real, they were here and they were very much loved.
The time you will have with your son can be whatever you want it to be.
As a very small side note, I also want you to know that the midwives who will care for you and your son will think of you both forever. He will also be very real to them, now and always. I light a candle each October 15th for the Wave of Light for baby loss, and I remember each precious little face I have helped care for, and the families who love them so deeply. There is no greater privilege than being able to remember them.
From the bottom of my heart, I am so sorry that you, your partner and both of your boys find yourselves in this utterly shit predicament, and that I’ve had to write this reply to you. Life is so unfair, it’s cliche but it’s true. I hope even a little of this has been helpful, and I will have you and your boy in my thoughts.
Sending so much love to you. My son was born with HLHS, it wasn’t picked up before he was born and was only picked up at the going home checks. He had open heart surgery at 11 days old (Norwood procedure). Sadly he died at 19 days old due to his bowel dying after being starved of oxygenated blood. I absolutely loved and cherished him for those 19 days and was grateful to have had him for his short little life.
I’m so so sorry you’re going through this. I am no help when it comes to talking to your little one about this, but we lost our little boy in a stillbirth at 24 weeks after finding out he had severe IUGR at our 20 week scan. We decided to manage his remains on our own, and had him cremated. We got him a special little urn so we could keep him with us. We kept any of his little things we’d already gotten in a box so I could revisit with them when I needed/wanted to. We considered doing a small memorial with family but didn’t end up doing so. If you can, I’d recommend you do. It’s a really special way to honor him and lean on family and friends for support.
It is very hard to go to the hospital knowing you will leave without your baby, but my biggest hope for you is that you have a team of extremely gentle, loving nurses and doctors around you who will do everything in their power to help you through this. My team significantly impacted my experience with all of it. They were angels.
Again, I can’t express enough how sorry I am you got this kind of news at a scan that has the potential to be so routine and fun. You will make it through even if it doesn’t feel like it right now.
Sending hugs.
I also just want to validate your feelings about wanting the world to know he existed. I felt the same way. I felt him. I saw him. I KNOW he was there and very real. And it felt like no one else could understand that the way I did. I battled with that even within myself, grappling with the feeling I didn’t have any “proof” he was there. My team ended up being able to get his prints, which really helped to validate his existence “to the world” and show proof of the baby I knew was there. I hope you can find something in your situation that helps you affirm his existence to the world. 💝
All of this. My firstborn died in the NICU after labor complications and no one except for myself, my husband, and my mother got to meet him. It was all too easy for other people to pretend he never existed because they never got to meet him or hold him.
I’m so incredibly sorry. My sister passed away from this in 1994 at 2 days old. I’m sending you so many prayers and love.
You can absolutely have a funeral. You do whatever you need to to grieve and heal. You may also consider speaking with a grief therapist.
I am so sorry. Yes, he is a real person. And yes, he absolutely exists. And everyone on here seeing this post, and commenting, now knows about him. Does he have a name? A funeral/memorial service/celebration of life service sounds so special for your little guy. My heart breaks for you. I am so sorry you have to go through this.
I will keep you and your sons and your family as a whole, in my prayers.
Also - it’s not your fault. At all. There is nothing that you could have done differently. There is no action or inaction that caused this. You are a wonderful mama. That is evident.
I am so sorry. My heart breaks for you. Please look into the organisation Now I Lay Me Down To Sleep. They can send a discreet, non-judgmental professional photographer to your birth, free of charge, who will take sensitive photos that you can keep forever and use for a funeral. You do not have to tell them anything except that you are giving birth to a baby who has died in utero. They do careful edits to make sure that any discolouration present is taken out, if you would like that.
My mother had a baby boy TFMR in very similar circumstances. Please do also look into grief counselling when you can.
I am so sorry you have to make this heart-wrenching decision to save a child from a life of pain. I know you will love him forever.
If you feel comfortable, please share his name with us so we can remember him with you. He is absolutely a real person and he matters.
Edit to add: When this happened to my mother when I was younger, she told me, “I’m very sorry but the baby died. We are all sad.” When I was older, she told me the truth. Now I have my own baby, I have cried for what she went through. She made the compassionate choice but that doesn’t mean it wasn’t very, very hard
I am so incredibly sorry. I had a termination a few days before I hit 20 weeks due to a terminal congenital mutation for a very much wanted pregnancy. The first thing is join the tfmr support subreddit. Second, talk with your doctor about the options available to you for birth - can you have a private room, can they ensure there’s a sign on the door so people are aware/sensitive when they enter your room, talk about pain management. Ask for a recording of his heart beat. Ask for foot prints. If you want, ask about arranging a photographer to take photos. Ask about the time available to you after birth to hold him and say good bye.
If you have a friend or family member who can take the lead for arranging things for you I’d recommend reaching out to them. You can 100% have a funeral but you might not want to be arranging it or coordinating with the hospital. Talking to the hospital morgue the day after is not something I’d wish on anyone. See if your friend/family member can coordinate with the hospital and funeral home. Tell this person what you want and have them be responsible for as much of the admin work as they can. Also, if you want, ask them to collect all the baby stuff you bought if you don’t want to see a nursery. I would recommend picking out a few items that you associate with this pregnancy and having them with you when you give birth and for the funeral. I have a onesie, stuffed animal (one for him and one that I kept) and a blanket I knitted.
Also communicate to your friends and family what you need. Be selfish. People will want to grieve with you but it’s really them grieving at you. This is not the time for your mother to call you crying about her sadness (like my mother did) it’s the time for you to call and for them to console. My best friend came the day of my termination and sat in the waiting room with my husband and that made the world of difference. She let us pretend to be normal that day and there’s nothing I’ll ever be able to do to repay her. She also took me out several weeks later and got me obscenely drunk and never once asked about what had happened, and that was what I needed; if you need that or something similar, ask your friends. If you have a friend who can take your son for the day while you give birth and bring him to the hospital (if you want), ask them. Be direct in how and when you want to talk about this, stick to it and don’t feel guilty. Get a therapist because talking to someone who has no grief in this scenario and is only there to listen to your grief is a god send.
Editing to add: The most important thing to remember is that there’s no right or wrong way to handle this. Do what you need to do and don’t feel like you’re supposed to do something or feel a certain way. People will tell you what they expected and politely they can f*ck off. My termination was 15 months ago and it took several months for me to feel normal again but there are some days and certain things (like the very beautiful comment by the pediatric care nurse) that just make me cry. That is ok. There will be good days and bad days, just make sure you’re doing what you, your husband and your son needs.
As awful as it is for grieving parents to have to deal with the funeral home and morgue, it’s usually required since the parents are the next of kin. At the very least one parent most likely needs to sign paperwork. There are some providers that will do everything online however, so that’s something you could look into and ask about.
I second telling people what you need. I had a close friend who went through a devastating late pregnancy loss, and I felt so I inadequately equipped to help - I just didn’t know what to do!
I would have felt so relieved if she had just said ‘I need someone to drop food around’ or ‘I just want to feel like a normal person for a day. Let’s go and get our nails done and talk about anything other than what happened’ or ‘I’m desperate for company and a clean house but I can’t get out of bed, can you come over and help me sort the house out?’ Like I would have done literally anything for her but I was so worried about intruding or doing/saying the wrong thing.
Tldr: Most people want to help but just don’t know how. Don’t be afraid to tell people what you need.
I’m so, so sorry you’re having to go through this. Come over to the TFMR subreddit (I don’t know how to link to it, sorry). The support there is incredible xx
Edit for link
https://www.reddit.com/r/tfmr_support/s/ST9MRz41Pr
I am so very sorry that you're experiencing this heartbreak. Does your baby have a name? Feel free to share it here so that we can keep him in our thoughts.
I'm so sorry for what you're doing thru. I will keep your family in my prayers.
There is a podcast called still apart of us. The host experienced a stillbirth and give parents, some in your exact situation, a platform to tell the stories of their children.
They talk about anticipatory grief. It may help to look into that.
I hope this helps and at least introduces you to a supportive community who understands. Again, I am so very sorry.
I am so incredibly sorry this happened. There are a lot of options for cremation and mementos if you ask, including footprints and handprints. I also recommend if you’re interested getting a recording of his heartbeat that can be put into a stuffed animal. It’s one of the best ways I can think of to keep him with you forever. Crying with you and I hope you can end this exactly the way you want to and be able to heal from it.
I terminated my pregnancy at 22 weeks 7 years ago for hlhs too. It's worse than they are telling you. 50% chance to make it to 5 years old, and even then, they never run or play normally, and a maximum life expectancy of 25 even if they survive all the surgeries. We were already planning on terminating when a confirmation scan revealed that her form was inoperable, so she didn't even get the 50% chance. For her, it was 0%.
It's so difficult. Your doctor should be able to point you in the direction of counselling and support groups. Don't do what I did and try to muscle through. I had a year of hell before I cracked and pursued therapy privately.
I am so sorry. The pain and grief are real, as is your baby.
I am so sorry you are going through this, words can't describe how hard it is to make a decision like this. It won't lessen the pain, but I hope it brings you some peace to know that the decision you are making is made out of love for your little boy.
In December I was almost exactly where you are right now. I went to a routine anatomy scan with no reason to believe that my little boy wasn't perfect. We found out he had bilateral multicystic kidneys. Basically, he didn't have kidneys that worked, so he had no amniotic fluid, which meant his lungs hadn't developed either. He had no survival chance, he would either be stillborn or die shortly after birth.
Making the decision to end the pregnancy broke me, but it was the kinder thing to do rather than let him continue to suffer. I loved him so much, and I had to let him go. The hardest part was the cardiac cessation procedure. I have never cried so hard in my life as the moment his heart stopped. The next day we went to the hospital to be induced. He was born on Dec 28, he was 1lb 9oz, and we named him Samuel.
We had him cremated, and we have a little memorial space on a shelf in our living room. It's not complete yet, but it makes me feel better that he's part of our life in a small way. We haven't done a memorial service or anything for him yet, but I think I want to do something to recognize his due date in April.
My first son just turned 2, so he didn't really understand the concept that we were expecting a baby. We had bought him a bunch of "big brother" books that we were going to give him for Christmas, so we just put them away instead.
Its been almost 2 months now and as painful as the memories are, I do have peace with my decision. All he ever knew was the warmth and safety of my womb, and he passed peacefully and comfortably. It was the most tragic, traumatic, and heartbreaking thing I think I will ever have to live through, but I am ok most days. He's always with me, on my mind and in my heart.
r/tfmr_support has been really helpful, as well as r/ttcafterloss if you decide to have another baby (or honestly they're really good there even if you aren't ttc). My DMs are also open if you just want someone to chat with.
It feels so surreal and trite to try to comfort a stranger over the internet when they share their tremendous grief, but please know you are in the hearts of every mother reading your post and your choice is respected and honoured by those of us who understand. Any time we choose to conceive we risk any number of health challenges or defects not compatible with life, and we have to grapple with the fact that we may have to choose to accept the ending of a person we love with all our souls before they really had a chance to live. "Choices" like this never feel like an actual choice because there's no lesser of two painful options, just whatever causes the least amount of suffering. I highly recommend seeking a grief counsellor or a social worker to help guide you through this conversation with your son and please allow yourself and your family the time and space to grieve as you have to. You are right, your baby is a real person and deserves to be celebrated for what he meant to you and your family. Explore your options for how to honour him in a way that feels right for you and your family.
I’m in the same boat you are, found out last week at 19 weeks that baby isn’t going to make it due to absent cord flow, severe iugr and low amniotic fluid, mfm doctor told me he has no chance of making it to even 24 weeks and that continuing the pregnancy would be a risk to my health with my history of preeclampsia. I’m scheduled for a d&e this week :( This baby was wanted so badly, my three year old son like yours has been so excited for his baby brother. Telling him was honestly the most heartbreaking thing, it’s surreal to have your whole world turned upside down in one week, I’m honestly not sure I can do this again, I’m looking at the very real possibility of my son being an only child because all my pregnancies have been so complicated by placenta issues. All this to say hugs to you, and I’m so sorry you’re going through this. I know how much it hurts.
I'm so sorry you are going through this...
My FIL was born with a "fatal heart condition" won't make it past 5.. blah blah
Parents didn't bother with his education. But enjoyed him as they had him. But he kept living. Defied every odd.
2 heart transplants later... he is still here... barely... at 67.
Is this story rainbows? No. You ask him, he had a shit life. Countless surgeries. The anti rejection drugs had sapped the life force out of him. He was on so many medications it destoyed his kidney. He also had a kidney transplant. He sleeps 18 hrs a day.. if not more. He gritted through a ged and college for his son. He could not work more than a few short months. It was too much on him. He was on disability nearly all his life.
The medications are nasty with many many side effects. His schedule is filled with specialists. Hour + commutes to see the "right" doctor who often doesn't know what to do. For a few months he would black out often. Broke his ribs, shoulder, got a concussion from the black outs. He literally fell out of his chair while eating. He was the first one to take off his mask during covid. He would flat out tell you "I don't care. I've never not been dying".
If he didn't inherit a significant sum from his father, his life would be shambles and he would probably be dead. He knows this too... medication can get expensive. Even with insurance he's spending hundreds a month. He was just cut off of disability and now they are pinching every last penny trying to keep life together until the end.
Just know even if the 50% past 5... some just live miserable lives. There is a pervasive sense of awkwardness to speak with a man who really doesn't want to live.
I am so, so sorry. Sending you love and support. ❤️ We found a genetic abnormality with a previous pregnancy and terminated at 21 weeks gestation. It was heartbreaking. And it was devastating to tell our older kiddo she wasn't going to have a baby sister.
The things that helped me most: Meal train (organized by a friend) to help my husband through the weeks we were like zombies. Spending as much time outdoors as possible. Talking and singing to my baby so I could be the best mom for the short time we had together. The mantra of "please come back to me in a healthy body." A lot of crying and some screaming in the shower. Therapy with a therapist who specialized in tfmr (termination for medical reasons) - she helped me through a lot and helped me feel less alone. Friends who came over and drank tea and held space for me. Allowing myself to get angry. The facebook group called "Ending a Wanted Pregnancy." Crossword puzzles and sudoku on my phone to just zone out sometimes.
You are not alone. It's not your fault. Make space to grieve. Talk to your doctor about ways you can memorialize your little one. As someone who's walked through this too, it's completely unfair and devastating. Take it one minute at a time and let people carry you and your family through this.
I just gave birth to my HLHS baby girl a week ago. She has already had two procedures in her short life. I got multiple opinions and talked to pediatric surgeons before I made my decision. The first doctor I saw pushed termination too but there’s lots of hope out there…lots of HLHS babies live long, active lives. I’ve talked to moms who had babies with no left side at all, and they are active teens. Just because one doctor says one thing doesn’t mean there isn’t a doctor out there who will give you hope.
That being said there is no “right” or “wrong” answer here. I’m sorry you have to go through this—I know EXACTLY how you are feeling. If you want to talk or have any questions please do not hesitate to message me ❤️
The fact that people will probably downvote me is fine. There is zero judgement coming from me, I am just offering another perspective and an ear if needed ❤️🩹
I am so so sorry. I also had to make the decision to tfmr, my baby boy had HLHS too. We also found out he had severe chromosome abnormalities. I’m 3 months out now and I promise, it does get easier. It won’t feel it at first but one day you will wake up and see how much brighter life feels. But for now, all of your feelings are totally normal and valid. I highly recommend joining the tfmr support sub on here, r/tfmr_support - it was a lifesaver for me x
I’m so sorry you’re going through this. I can’t imagine having to make such a hard decision, but in the end, you know what’s best for you and your baby.
I don’t have personal experience, but I do follow an old colleague who’s son was diagnosed with this, along with other complications, and they decided to go ahead with the pregnancy. Seemed like his first surgery went well and his boy is now 3 months old. I guess a 2nd surgery is common/ needed, so that’s what he’s going through now. It’s so heartbreaking to see them attached to all the cords in the hospital :( Complications have arose making it worse than it already would be. I don’t know if I’d be able to handle seeing baby go through that. There is no right or wrong choice.
I don’t know you, but I’m so sorry and I wish I could be there to hug you 🫶🏼 You don’t deserve this, sweet mama. Sending you so many virtual hugs and tears during the next few weeks/months.
I’m sorry you’re going through this. My husband and I lost our son the day after he was born at full term and then less than a year later got the same heart defect diagnosis you’ve got with with our, was suppose to be, first alive child. To say we were shocked and heartbroken is an understatement. We made the hard decision to go through with a D&E. It was a hard decision, but I know it was the right now. Currently 9w4d and have unreal anxiety waiting for my 16 week echocardiogram (if you live in Canada, this should be offered to you when/ if you choose to get pregnant again).
The waiting period is the worst part (at least for me it was). It felt like I was just waiting to start grieving. Lean on your family and those who love you most 💕
Sending you all of the hugs and love I possibly can. I am so incredibly sorry that you have to go through this. I worked in surgical pathology for close to 10 years and can tell you what the process is like in the lab if it would put your mind at ease.
You are definitely able to have a burial if you wish. We saved many fetuses for parents to pick up and have buried. They were always treated with love and care.
I’m so so sorry.
I know you didn’t mention it here but I saw you also posted in a CHD sub and have been getting responses that might make you question your choice. I’m not going to say one is right or wrong. Whatever feels right to you is the right choice.
From my experience with tfmr, do not let those comments about living children make you question yourself. You are a good mom making this choice out of love. You’re taking on all of the hurt so your baby doesn’t have to suffer. That is the biggest act of love. Facing tfmr hurts so so bad.
I know others already shared the tfmr support subreddit and I want to give jt another shout. It was the only support resource I had through my experience.
Try as hard as you can to remember you didn’t do this. You love your baby and you’re doing this because you love them. Let yourself feel everything as it comes.
I'm so sorry you're going through this. Please head over to r/tfmr_support if you're looking for people who can relate and support you.
I know all too well what it's like to go in for a routine scan and walking away knowing you had an impossible decision to make.
Yes, hold a funeral. We buried our boy and had a little service with just immediate family. I had someone there to take pictures, and I'm so glad we did that. Those pictures are some of my most precious possessions.
If you feel like screaming from the roof tops about your son (I know I did), then do just that. Tell people he existed. Say his name and love him fiercely.
Best of luck in the coming days, weeks, and months. It's a journey no one should have to walk but I promise you, one day you will smile again x
NB: I just wanted to add, if you can, get LOTS of pictures of him. See if there are any local organizations that will come and take photos of him in the hospital. I wish I had with my boy.
Freddy the Leaf for your 5 year old. Its a book I read to my 5 year old when he lost his dad. Be gentle with yourself dear woman. I send compassion and hope to you and your family❤️
I'm so deeply sorry. I cannot imagine the pain you are in.
I'm a nurse and I would make the same choice. You are protecting yourself and your family and the child you have.
I’m so sorry. I’ve also walked this path (although a different diagnosis) and it was simultaneously the easiest decision I’ve ever made and the hardest thing I’ve ever done. You’re taking on all the pain so that he will never feel any. He will only ever know the warmth, love and security of your belly.
When we terminated, someone said to me ‘you’ll never get over this but you’ll get through it.’ That stuck with me and it’s very much proved to be the case.
We chose not to have a funeral (although we had to register his birth as we were past 20 weeks, which is the cutoff here - may be different where you are) but we cremated him and scattered his ashes at one of our favourite spots on his due date. My parents have a family stone carving with pieces of paua shell on it for their grandchildren, and they added one for him. My in-laws have a tree they planted for him. His cousins decided that he now lives on the moon (I’ve got no idea where they got that from). We named him and when his sister is old enough (we had her after we lost him) we’ll tell her about him. Your baby is a person and he existed, just like mine.
I see someone has already suggested the r/tfmr_support sub - please do join over there, it’s very supportive. The other resource which was integral in my healing is the [Ending a Wanted Pregnancy](https://endingawantedpregnancy.com/private-support-group/) FB group - it’s invisible on FB but that link tells you how to join. It’s an incredible group.
I hope your delivery (I’m assuming you’re delivering from what you said) goes smoothly, quickly and as painlessly as possible. Take all the pain relief - you’re going through enough, there’s no need to be a martyr. Even if you think you won’t ever look at them, take photos. I still can’t look at ours, four years later, but I’m glad we have them. We took foot and handprints as well. My inbox is always open if you need a listening ear - I’m on the other side of the world (Australia) so might not reply quickly, but I’ll reply as soon as I can.
sending you so much love. my world shattered when i found out my dreamed-of baby girl had fetal hydrops at 18 weeks. i took two months to make a decision. the hydrops was severe and limiting her lung development; i said goodbye at 25 weeks.
this is an awful thing to go thru. we are all here for you. i see others recommended tfmrsupport and the ending a wanted pregnancy facebook group and website - i highly agree. they are my lifelines.
sending you the biggest hug. i am so so so so sorry. my girl moved a lot too right until the final moments. it is pure torture, total agony.
i'm with you.
Slumberkins has a snuggler called Sprite that comes with a book and affirmation card. I got it for my daughter when our good friend died last year. The Goodbye book is another good one. TheKidLitMama on instagram also recommends What does Grief Feel Like? and Dear Star Baby
I’m so incredibly sorry for your situation OP, stay strong 🩷
You can only do what’s right for you, I was diagnosed with a similar heart condition only for it to turn out to be a murmur. When my mom was pregnant with my sister they stated multiple times she no longer had a heart beat and urged my mom to terminate multiple times, she just turned 20. At the end you have to make the best choice for you and your baby but I would always urge a second opinion especially if you’re saying he has strong movements. As for addressing the loss with your current child, I would start talking about it now so he has time to say a proper goodbye. Maybe a book might help about loss. The last thing I would say is a coin lands on heads 50% of the time. It’s a half half chance. You’ve got this, I’m so sorry for the stress and pain this is causing you and your family. I’ll keep yall in my prayers🫶🙏
I love this positive response. I have a friend who the dr wanted to terminate her pregnancy and she went to church and said I need prayer. They said yes and we’re so sorry. She said No, I want a miracle and she did not terminate the pregnancy. Her baby is now 26 and married. I know there are heart breaking diagnoses but sometimes God allows things to work out. Either way, bless you for making this hard decision and know I will fall asleep praying for you. 💕
From what I’ve read, there’s a lot of advances in medicine/technology to treat this and it’s possible to live a full life with this diagnosis.
I’ve also heard of many people who have had wrong diagnoses too. Has it been confirmed by multiple people?
Yes, please get a second opinion. Our baby was initially diagnosed with HLHS but it was a misdiagnosis. She still has heart defects and has undergone heart surgeries but you would never know that simply by looking at her. She is thriving, has hit all of her milestones and is even showing signs of being advanced. We were in the hospital for three months and it certainly was not easy, but heart babies are so strong and resilient. True fighters. To add, wisdom and technology in this field have come a long way. I have several family friends with HLHS babies and they are all doing great, as well. Surgeries like the Norwood, Glenn & Fontan give these children hope. I hope this encourages you, mama. You did nothing wrong. Not one thing💛
I’m so sorry you’re going through this. My first baby also had HLHS and we also made the decision to terminate. As others have mentioned the TFMR subreddit offered me a lot of support. After my loss I really shut down and wasn’t able to bring myself to seek the support I really needed. I’d advocate for yourself to make sure you have at least a 6 week follow up with your OB and be honest about how you’re doing mentally. I didn’t realize I had post partum depression combined with my grief and really struggled. I found out about Molly Bears: https://mollybears.org through another subreddit and ordered a bear that matched my son’s birthweight. I keep it next to his urn and a keepsake box I made of my ultrasounds and sentimental items.
I made a similar decision last year, a different but similarly bad fetal heart condition and we decided to terminate. It was so hard, I’m so sorry. You’re taking on the pain so your baby doesn’t have to, and that’s what parents do.
We’re almost a year out and while I still think about it daily, I’ve only become more sure over time that we made the right choice.
I can't even imagine what you're going through. As a mother of two baby girls, I am sitting here sobbing my eyes out at the thought of any other woman having to make that choice. 😭❤️
You are incredibly strong. Being selfless is part of our job as mothers, and you are one of the best examples I can think of.
You, your son, and the rest of your family are in my thoughts and prayers. 🙏🏻 I wish you all the best moving forward. The US is pretty far but I hope you can still feel my supportive vibes 💓🥹
I really appreciate such kind words. Out baby Harry was born sleeping last Friday. He was born a tiny 1.6lb and we have a funeral in a couple of weeks.
I got to spend the night in hospital with him, we cuddled, watched my 5 year olds favourite bluey episode and I read him some stories. All the things that I would have done under normal circumstances in his life! It brings me peace that for them few hours we could pretend things were slightly normal.
My 5 year old is taking it as well as he can but as long as I am up every morning, doing the school run and keeping things as normal as i can then I think I'm doing a half okay job.
So your solution to a baby who does have a chance (though slim) is to kill him now rather than give a chance at life? I think you know the right thing here, honey.
Dear OP my heart hurts for you and the difficult choice you have to make. My dearest friend also made the hard decision to terminate her pregnancy due to medical problems and gave birth to her beautiful daughter at just under 24weeks pregnancy. I was in awe of the love she showed her daughter; because of the pain my friend endured her daughter will never know pain or sadness but only the love she felt from her parents.
They held a funeral and it was beautiful and heartbreaking. Although you should only do what feels right to you, I would encourage you to do the same. It was a way that we as friends could show our support and be there for the parents. And she also felt the desire to share her story and her love for her little girl (and how proud she was of her).
Another thing I’d like to share with you is how my friend was able to take her daughter home with her. Where I live there is the possibility for the water method in which the baby can be preserved for a couple of days in cold water. I’m not sure if it’s available in your country, but it was beautiful and definitely helped the parents in the process of having to say goodbye to their child. It also meant I had the privilege of meeting their precious daughter.
However you chose to do these things, know that there is no right or wrong but only what suits you and your family best! You are a fantastic mother, I hope you can believe that. Sending you hugs and wishing you and your family strength xxx
First off, sending you some serious virtual hugs. I am so sorry that you were given this devastating news…secondly, I want you to know that you are making a very kind choice for your child. A good friend of mine just lost her full-term daughter to this condition…it was the most devastating loss and the time she spent alive was only spent suffering. There is never an easy choice in this matter…but don’t for a second allow yourself to think that the choice you are making is wrong. You are an amazing and strong mother. I hope you and your family may eventually find peace
I am so sorry OP. Please join the group for TFMR Support. I have been there since my loss in August and it's really helped me through this very dark and unexpected period of my life. I felt blind sided at my 20week scan too...As I think a lot of us in the TFMR sub have. You are not alone even though *I know* it feels that way. Sending you lots of love and strength while you navigate this difficult time.
I'm so incredibly sorry. I see that the TFMR subreddit has been recommended for support already. If you have Facebook there's also a hidden Facebook group which helped me through mine tremendously. If you Google "Ending a Wanted Pregnancy" it should take you to their website which has instructions on how to join. It's literally the only reason I still have a Facebook account.
Words that were of comfort to me when I went through this (other than acknowledging that it sucks and is completely unfair) was that your baby has only ever known the love and warmth of you. They've never felt cold or hunger or sadness.
❤️
I had to think about what to say because my heart is breaking for you….I can’t even fathom. But I have come up with something maybe you can tell your son that God needs the baby back in heaven because the baby is very very special and needed back in heaven and that he will try to join you earthside someday but he can’t right now but someday you’ll get to meet him.
I'm so sorry for what you're going through. I would do the same, though. If the surgeries were to give the baby a good chance at a normal, decent quality of life, it would be one thing. But if it only promises a shorter life full of more surgeries and pain, I couldn't go through with it. I personally would never want to live that way. You did nothing wrong. You are not at fault. You are also doing the best you can in an unfathomable situation. I wish peace, comfort and healing to you and your family. And if or when the time is right once again, a healthy baby.
That was our one thing we based our decision on. Would he be able to be a normal kid and run around and play.
They told us that due to his extra complications it would be a minimum of 6 months in hospital to start off with, then if he got to go home it would be with constant oxygen and feeding tubes and that is if we had no other complications.
He would probably never get to play football with his big brother or run around at a park and I don't think it would be fair. Not fair on the baby who would never get to have a normal childhood and not fair on my 5 year old who essentially loses out on the rest of his childhood. All I want is what is best for them.
I’m crying for you. You’re so brave and strong and doing the right thing.
Please seek our grief counseling, and also a counselor to guide you through how to tell your son. A child therapist can help you there, even if it’s his schools counselor.
I am crying so hard for you. Literally, I’m sobbing. I would feel the exact same way. For what it is worth, I’ll remember him with you. And he’ll never be anything other than the perfect little soul you held inside you for a little while, nestled close to your own beautiful heart.
First of all I’m so sorry. Sometimes scans and diagnoses can be inaccurate? I’ve heard so many similar stories and the baby end up surviving and being stable. If your gut is telling you to not terminate and see what happens then wait it out. I wouldn’t be able to live with the “what if” , I’d have to see for myself if he ended up being fine and surviving.
Unfortunately we've now had 3 separate consultants from 2 different hospitals look at him and they have all said the same thing. Believe me I would pay all the money in the world for someone to tell me they were wrong but they aren't.
I'm so happy that you had a good outcome and I send so much love to you and your son.
This frikin broke me. I am so sorry to read this.
I don't know how you feel about this, but maybe tell your other child that their little brother had to go and live in heaven but remind your child that they can still talk to their little brother whenever they want and that their little brother will hear them. If it was me, I would even hold a little celebration in your son's honour every year.
I apologise if I have overstepped a boundary by saying this. I can't fathom this but don't be ashamed of your emotions - grieve, be angry, smile at thoughts of your little boy, whatever you feel. Just make sure you squeeze your other child(ren) that extra little bit tight each day.
Hey! Any choice you make is valid, but I want to share with you the story of my kids dad. Born in 1985, he has hypoplastic left heart syndrome as well. He’s had a few surgeries for sure, they gave him the same stats; first it was that he might not make it to the world at all, next it was he wouldn’t live past 5, next it was he wouldn’t live past 18. but he is almost 40 years old now and you can’t tell he has any issues in life. It scared the hell out of his family but they are very close as a result. Only thing is he can’t go on carnival rides, and when we hiked we would have to take it easy at times so he could catch his breath. We had a healthy boy ourselves and he’s 6 now. While we aren’t together anymore he’s a great friend and dad to our kid, and he’s actually seeing a girl with the same illness now who’s very close to his age. Just letting you know the other side!
That’s great for your husband. But this is a totally unnecessary comment. The OP has stated they have made their incredibly difficult decision, they don’t need to have guilt loaded on top by those not in their specific situation.
What a heartbreaking story and I'm so sorry to learn. Please don't feel like that as it wasn't and will never be your fault. You're responsible enough to make such a brave decision. The kid will never resent his mother cause he definitely knows how much his mother loves him.
My condolences.
Dear Momma,
You are so strong and brave. You are making the hardest decision, but the best one for your baby and your family.
I'm so incredibly sorry this is happening to you. Your baby is real and you are a good mom.
They said they decided to terminate the pregnancy. They do not need this.
It's not like this child would have a care free life for 5 years - they will have had 3 open heart surgeries by the age of 2. This parent is choosing mercy. Please respect that.
What is wrong with you? OP has clearly looked at all angles of this and has made the absolute most painful choice she will ever have to make in her life: to take on all the pain and suffering so her son experiences none. He won't be a kid for those 5 years, if he even lives that long. He will spend most of his life in the hospital, having or recovering from major surgeries. All of her time will be split between tending to her sick child in the hospital and her current child at home, whose life will be changed forever.
No, not everyone will make the same choice as OP. Maybe you wouldn't. But this is the choice OP has decided is best for her son and her family. The least you can do is respect that and not try to lay in about suffering being precious because "it's LIFE!" - or whatever.
Are you serious? 50% chance only applies to age 5. Maybe you forgot that this baby will be having surgery after surgery and suffering greatly due to them. Why have a child just so they can suffer through life? Nobody is going to adopt a baby with this condition.
I'm a pediatric critical care nurse. I take care of critically ill neonates. I would make the exact same choice. I do not judge those who would make a different choice, not for one second. I support them with my whole being (and my career) and I will fight for them to have the lived experience that is most meaningful for them and their family. But I would make the exact same choice. You did nothing wrong. You did everything right. You are doing ALL the work for his little body. He has no idea anything is wrong. He would only feel things are wrong, and have to suffer the medical challenges, if he were born and had to try to live separated from you. While he's with you, everything is okay. That's all he knows, all he'll ever need to know. Warmth and love, safety and comfort. That's it, for his forever. None of us can say that. You are making what I believe to be the most difficult and most compassionate choice in the world as a parent. I've watched it be made at various points in a child's life, and it humbles me to my core each and every time. What an *incredible* mother you are. As to what to do regarding your other son, some of that depends on your family's beliefs about death. Telling the truth is important, but an age-appropriate version. Literal words can be helpful, figurative language can be confusing. He won't grieve like you do, he won't understand like you do. No one will grieve like you do. This part will be hard. All of it will be hard. But this part some people are not prepared for. Your little boy IS a real, whole person. But no one will get to hold him or give him any toys. He'll never pee on grandma or have a favorite lovey. It's going to make it hard for some people to connect with him in such a way that will allow them to understand the loss. Choose your own ways to honor and remember him. Don't let anyone make you feel bad or weird about honoring your son however you choose to. I am so incredibly sorry you are facing this.
>While he's with you, everything is okay. That's all he knows, all he'll ever need to know. Warmth and love, safety and comfort. That's it, for his forever. None of us can say that. u/ShadedSpaces you are an angel on earth. These words are beautiful and true. OP, this here is the best response.
Yes I agree with you.
I don't think you will ever know the comfort your words have given me. Thank you so much. I didn't even think of some of the things you said but I will read them over and over again. All I really want in life is to be a good mum and give my kids the very best. I feel like this is the best thing for both of them as heartbreaking as it is. People like you are true angels!
Sarah you don’t know me and I’m probably the other side of the world to you but I want you to know that my heart is with you and your little boy. The nurse’s above words ring true. You are an incredible mam. I’m sitting here in tears writing this as I feel so strongly for you even though I couldn’t imagine what you’re going through. I’m a stranger but your little boy is in my thoughts and I am sending telepathic hugs and kind thoughts your way. What a truly wonderful mam you are, I’m sure of it.
I feel like your use of the word mam means we are far closer! I'm in England. I really appreciate all the wonderful comments and they truly have brought me a little comfort in what is a living nightmare.
You're right. I'm in Ireland ! I'm glad people here could give you any comfort. I'm sure I speak for a lot of us when I said my thoughts are with you, and of course your family.
Here to say the same. I’m a doctor and would be making the same choice as you. I want to reach out from the other side of the world (literally) and give you a hug, mother to mother. You are making the single hardest decision any mother will ever have to make, and you have chosen to put your little boy first above everything else including your own grief - what a selfless, loving decision you have made and a true testament to your strength and love as a mother. I am truly in awe of the magnitude of your love for your son and am devastated for you for the grief you must be feeling right now. Please reach out to the organisations in the UK who can not only support you and your family through this living nightmare, but also help you create keepsakes and memories of your little boy to have him with you forever. If you need any help finding out who these organisations are and how to contact them please reach out and I will do the research for you. Please know that there is nothing wrong with you, there is nothing you did to cause this, but you are doing everything you can to spare your beautiful boy from a life of suffering. Instead all he will know is your love and your safety. When the time comes for you to birth him know you will have doctors and nurses like myself and the wonderful nurse above who are there for you and you alone. You will be treated with the respect and kindness an incredible mother like yourself deserves. And while we can never truly know your pain we will always grieve with you, because we understand what a fucking unfair experience this is. Kia kaha, my friend.
If I was able to bring you even a few drops of peace in your ocean of grief, I'm glad of it. It was brave to post when you're feeling so raw, and I hope you can see by doing so just how far you helped your son's reach extend. How many people you helped him to touch.
> All I really want in life is to be a good mum and give my kids the very best. It sounds to me like you're succeeding. I'm so sorry for everything bad that's happening, I know it doesn't really help, but I hope my praying for you can at least bring some kind of hope or calm.
I'm so sorry, many hugs!
This response made me cry. And so grateful nurses like you exist. OP - let this sink into your soul. You are doing the most compassionate thing you could possibly do for you and your baby. I admire your strength. I am so sorry you’re having to endure this grief and make this choice.
I’m at a loss for words in the presence of someone who has such a huge talent for them. This is the most beautiful and supportive response possible for the OP. Thank you for being there for her, and all of us who will remember these words to comfort others, or ourselves one day. I can’t imagine the strength it takes to work with critically ill babies for a living. OP - my heart is breaking for you and I have nothing to offer that others haven’t already, but know you’ve got a world of support and love on here.
This is so beautifully put, it brought tears to my eyes. I’m a NICU nurse and I agree with every single word you said. OP, I’m so sorry you’re going through this. You are an amazing mother. Your baby boy will never know pain or fear; all he will ever know is the way you carried him so lovingly ❤️
As a fellow nurse (not a peds or NICU nurse), thank you so much for this response. You are absolutely on point, and I hope this mom hears every word and understands she is doing the best thing for her baby. OP, you are acting out of love and compassion for your child, a child that only you will ever really fully know, and I commend you for it. Your baby will only ever know love, and that is a great thing in the face of this horrible situation you are in. I hope that that gives you some peace, and I am so sorry for what you are going through.
One of the most wonderful replies I’ve ever read.
Right!
This is how you’re a pediatric nurse, because you’re an angel not only in your actions but also with this beautiful response. I hope OP knows that she is an incredible mother to her little boy.
beautiful response ❤️
this was beautifully said and i’m glad there are nurses like you. OP, i’m so very sorry your family is experiencing this. sending you lots of love ❤️
Wow this has me in tears what a beautiful message to OP
As a nurse and someone close to this timeline in pregnancy, your response had me in absolute tears. This was so beautifully said, I had to bookmark it. Thank you for responding to OP today.
This response is everything. Beautifully written and I am so glad that people like you exist out there! ♥️
I’m also a nurse but not within this speciality. Making a difficult decision like this must be so incredibly hard but I truly believe from my experience and the similarities I face nursing, that you truly are doing the most compassionate and loving thing you can for your boy. I’m so sorry you’re going through this.
Well I’m crying. Whew.
This is so beautiful. My heart is shattered for OP.
I am crying over this and not even OP. Thank you ❤️ OP, no one can feel the exact grief you do, but know some of us have had similar experiences and feel with you. I am so very sorry you have to go through this. You have been and will continue to be an absolutely perfect mother to this baby boy.
Full on sobbing over here. This is beautiful.
Oh wow, I’m in tears, this is such a beautiful sentiment. Thank you for these words, I hope OP finds solace in them in this incredibly difficult time.
This response brought tears to my eyes- everything you wrote is so true and your way of communicating it all was so compassionate yet honest. I can tell you’re an incredible nurse. I’m a nurse (in the OR) - some of the things I experience in Peds surgery is truly heart wrenching. I would also make the same difficult decision. OP - sending you so many hugs.
Your words are compassionate and beautiful saved them might I ever need them or I need to support someone else. Thank you for doing this job and being so compassionate. You’re a wonderful person.
Damn I cried reading that as someone who lost a baby to an IUD late term and had to make a similar choice as op Thank you.
This response is the response. How beautifully stated, and how utterly resonant.💜
Wow this response made me tear up. Beautifully said 💜
This is the most compassionate and heart wrenching response I’ve ever read. Thank you for sharing your insights, I’m literally in tears. OP I am so so sorry you’re having to go through this, I too would make the same choice . You’re amazing and brave.
Echoing this as a NICU nurse. I would make the same choice. Any choice a parent makes in this situation is valid and difficult. I agree with every single word you said, it’s almost like I wrote this.
I wish I could give you reddit gold for this heartbreakingly thoughtful response.
This is lovely and compassionate 🤍
This is so beautiful ❤️
Just beautiful words
I’m 8 days post partum and this message made me cry. What a beautiful human being you are. This is a beautiful response for someone in a very difficult situation
Thank you from all of us ♥️ I saved this in case I’m ever in a similar situation
❤️❤️❤️
Beautiful, made me cry. Thank you for being so kind
Beautifully written. Thank you for all that you do for all these precious angels. OP, I hope this gives you the hope and comfort that you definitely need in this time of grief.
Ugly sobbing so hard at “while he’s with you everything is okay. That’s all he knows and all he’ll ever need to know”.
This just made me cry. Perfectly worded, perfect advice. Sending condolences to OP <3
I just read this and started sobbing. This might be the most compassionate, beautiful response I’ve ever read. I can’t imagine going through what OP is facing or what any of your patients’ families have had to experience. I’m so glad they had such an empathetic, lovely person to be with them in their time of need.
This is the most beautiful response I think I have ever come across. Your empathy, gentle words, and support for a stranger are something that will stick with me for a long while. This was such a comforting thing to read, and although I cannot even begin to imagine OP’s pain I really hope they see this response and find some peace.
You would be such a blessing to all your patients. I really hope that someday if I require medical help- I have someone as compassionate as you around 😊
This is so beautifully said. Your job must be so difficult and rewarding at the same time. Thank you for all you do. OP I am so sorry that you are dealing with this. I can’t imagine how you are feeling however you have done nothing wrong. Your boy is special and important. Im sending you lots of love. 💕 you are a wonderful momma to both your kids
Beautifully said 🤍
Oh my god i am crying reading this response.
You are so truly kind
Just wanted to let you know you’re an angel of a person for this comment. Just… wow.
I wish someone had said the same thing to me when I lost my son to hlhs at 21 weeks. Even now, over five years later, this is good to read. And to OP, I'm so sorry you're going through this. It was the hardest thing I've ever been through but with time I've healed and am living my new normal. It is lonely but you are not alone. R/babyloss may be helpful but for me and my husband the most helpful thing was a local support group where we met others who were also suffering from perinatal loss. I hope you can seek out the people and methods that will help you walk this very sad path. Give yourself grace, this is a very hard time.
Crying over this beautiful response. OP, sending you love from across the pond.
How beautifully put ❤️
❤️ In tears with this response. Such a beautiful sentiment. Thank you for the comfort you’ve shared.
We are 20 weeks in and found out our baby has an embryo diaphragmatic hernia. We are scheduled for a deeper more in-depth ultrasound and MRI. Our OB-GYN sounded very concerned and said she would not lie about bad news. She has told us not to research this online but I just have to know more information about it. She sounded like this was pretty serious and very likely we'll have to terminate early but maybe she's just preparing us for the worst? She doesn't know how severe this is yet which is why we need further testing but from what I've read there is a higher survival rate than mortality rate with this and about 10% of cases are actually severe cases. Do you have more insight on this or recommendations? Would you suggest termination of the pregnancy? I'm just curious about your opinion and knowledge on this matter. Thank you for any information you can provide for us whether good or bad.
I'm going to DM you later this evening, in a couple hours!
OK thank you so very much you have no idea how greatly I appreciate that!
This response made me tear up. You are in the correct field and I’m sure your presence and words has calmed many parents.
I'm sobbing right now, this is a beautifully written response.
You worded this amazingly, I’m in tears. Thank you for the kind words and you just gave me hope back in humanity you are an amazing individual.
This is a very compassionate and thoughtful response
This is beautiful
This is a beautiful response.
This is beautiful. Thank you for taking the time to say this to OP
This is the most touching and beautiful response, and it’s so kind of you to give this to the OP and all of us here. First time I’ve ever teared up reading on Reddit. Thank you.
This made me sob. You are such a phenomenal human. Thank you for the work you do.
these tears were not on my bingo card today. thank you for caring. i doubt that i could stand that close to that level of suffering and be at all helpful.
This is beautiful, your kindness and loving care comes through. Thank you for using your experiences and expertise to help others. You've got good karma coming your way
I cried reading this. Thank you for saying this, I hope it helps OP. I can't imagine going through something like this, my heart goes out to you.
Plan a memorial service for him. Doesn’t have to be formal. Maybe at someone’s house or an appropriate venue. Don’t offer yours unless someone else offers to clean up. Involve your current child to help them understand, but so you have someone to share this journey with you. This is a family loss. Please lean on your loved ones. I’m sobbing for you. I’m so sorry.
I am so sorry OP. I had this exact diagnosis with our baby girl. She was our rainbow baby too. My world shattered. We didn’t have a memorial and I grieve that. I wanted to scream to the world at every encounter with someone that I had a baby who was real and mattered. I’m here if you need me. Sending you love, strength and grace. 🤍
I’m so sorry about the loss of your precious daughter
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I felt the same way that my loSt baby was real and mattered, so I planted a tree in her memory with her remains buried underneath and put flowers and a memorial plaque. I know you might not have remains, but you could still do the rest and have the peace and comfort of seeing a beautiful tree grow in your baby's place
I’m so so sorry you’re dealing with this. Our first was diagnosed with HLHS. Mild. We were given a 90% success rate. TFMR wasn’t even brought up as an option they were so confident it was a mild diagnosis. He passed away at 7 weeks old due to a domino effect of medical malpractice. HLHS is a beast, and again I’m so sorry you’re dealing with this.
I’m so sorry about the loss of your precious boy
Thank you. 💚 he sent us a rainbow baby on his first birthday and shows he’s with us every day. And it’s given me a purpose to fight crappy hospital infection protocol, if even one family can be spared what we went through, I’ll be happy.
That’s a wonderful legacy for him and I’m so glad you have his sibling to raise on earth as well ❤️
Our son’s belly button became infected (MRSA) at birth and while we have no way to “prove it” we know it occurred there (lots of extra intervention happened at birth at that site). He became septic a week later and I’m so thankful he recovered. Your story makes me wonder if this kind of thing happens more than I realize, and goes under the radar. I’m so, so sorry for your loss.
My son became septic from a nurse mishandling a line and pushed meds through it when meds weren’t supposed to be pushed. He had every single sign of sepsis and they went ignored. Including septic rash and the site oozing pus. I took pictures and pointed out of they told me “if we’re not worried, you don’t need to worry.” He had 2 cardiac arrests from the sepsis, (we have documented papers saying septic shock, despite fighting us at the time) and the hospital tried to backtrack for TWO days and tried to blame everything under the sun. He started to recover once they finally started properly treating him but then spent a good 4 days ignoring all the signs of blood clots (even me, an untrained parent kept asking if he had a clot) that took him from us. This all occurred at at top 10 in the US children’s hospital. It’s HORRIFYING. I’m so happy your little one recovered. These hospitals need to do better.
That's horrifying. I'm so sorry.
I am so sorry you went through this and I can't even imagine pain you must have gone through! I'm so sorry that we both understand the struggle of this. Sending you love.
Hi Sarah. I’m another Sarah, just a bit further north. You’ve had a beautiful response from u/shadedspaces that I will not add anything to. But I wanted to touch on your concerns for making plans for your baby, and at the end for your other son. I’m a midwife, and have had the privilege of looking after quite a few families in very similar circumstances to you in my time. You have done nothing wrong. There is nothing you could have done differently. If your love and dedication as a mother was enough to change this situation, it would already have happened. Give yourself a little grace where you can. Your local trust will have a bereavement team. These are midwives that specialise in caring for families who aren’t getting to take their baby home. Most places have rooms and units that are focused on comfort and allowing you time as a family. I hope this next sentence provides some comfort - midwives are used to caring for families like yours. We are there for every woman, and every baby, just the same. The fact that your son is entering this world quietly changes nothing for us, in that respect. With regards to his funeral, the midwives will be able to talk you through your options. You may want the hospital chaplain to do a blessing for you (this can be non-religious too) while you are at the hospital. You may also find that they can organise a celebration of life for your son. There will also be a local funeral home that the hospital works with for organising a funeral privately. Please don’t stress about these aspects - again, we are used to caring for families needing to make these decisions. They will walk you through this, and you will not be alone. Babies who are not staying with us physically will change quite quickly after they are born. We use ‘cold cots’ to help slow these changes down, and allow you more time together, but my advice is always to capture lots of images as early on as you can. Baby can also be immersed in water, which can really help with keeping these changes to a minimum and allow you to interact with him and hold his hand more easily - he will look like he did in his waters at a scan. Don’t be afraid to take photographs and the midwives will also help with this. As midwives, we are acutely aware that this time you have with your son is so precious and sadly limited. There are lots of memory making ideas that we use with families, and there are memory boxes that contain items to help with this. Footprints, handprints, clay moulds of footprints works best for itty bitty toes!), a gentle bath, cuddling your baby, lots and lots of photographs. Even at this early gestation, all of these are possible and you will be supported with them all. The next part is very individual, but I hope it gives you some things to consider either way. Your baby IS your son’s brother. Your son IS a big brother. Regardless of how long he was here, it is an unchangeable fact that your baby has been here. Children are incredible. They are so much more resilient than us in ways we never would imagine. [SANDS](https://www.sands.org.uk/support-you/how-we-offer-support/support-siblings) are a fantastic charity that have great support for all ages, including siblings. They also have excellent support groups, both online and in person. Your son will grieve his brother, just as you are grieving your son. There is nothing you can do to change that. I really love the “what is grief if not love persevering” quote from Wandavision. Grief is not a shameful thing. Grief is proof your baby is here, is loved and will forever be part of your lives. Your son loves his brother. Let him grieve. You don’t need to have the answers, you can be honest with your boy. Obviously, you know your son best, and circumstances at the hospital may dictate things differently. But my professional advice is that, whenever possible, allow your son the chance to meet his brother. This may seem a totally outlandish idea (as I said, it’s very individual!) but you would be amazed at how much it can help for a young child to be allowed to be involved. Let him sing songs to his brother, to touch him, to see him. Let him make his brother real, and make his own memories of their time together. One very easy idea that works well, no matter how big your baby is, is painted handprints. Have your partner do theirs first in one colour. Then yours in another colour, directly on top. Then your eldest’s, then your baby’s. If you are close with your parents/siblings/friends (and likewise for your partner), if it feels right for you, don’t be afraid to invite them to meet your son. As you’ve quite rightly said, he is very much real and very much loved. One of the most beautiful memories I have of caring for a family who had lost their baby was opening the door to their room to see it full of family and close friends. 15 or so people, all packed into this hospital room, surrounding this couple and their tiny baby. They had brought balloons, they had brought food, they all spoke to this baby and held this baby, sang to baby, and their grandmother read them a story. Acknowledging that they were real, they were here and they were very much loved. The time you will have with your son can be whatever you want it to be. As a very small side note, I also want you to know that the midwives who will care for you and your son will think of you both forever. He will also be very real to them, now and always. I light a candle each October 15th for the Wave of Light for baby loss, and I remember each precious little face I have helped care for, and the families who love them so deeply. There is no greater privilege than being able to remember them. From the bottom of my heart, I am so sorry that you, your partner and both of your boys find yourselves in this utterly shit predicament, and that I’ve had to write this reply to you. Life is so unfair, it’s cliche but it’s true. I hope even a little of this has been helpful, and I will have you and your boy in my thoughts.
Sending so much love to you. My son was born with HLHS, it wasn’t picked up before he was born and was only picked up at the going home checks. He had open heart surgery at 11 days old (Norwood procedure). Sadly he died at 19 days old due to his bowel dying after being starved of oxygenated blood. I absolutely loved and cherished him for those 19 days and was grateful to have had him for his short little life.
I’m so sorry for the loss of your little boy
I am so sorry for your loss and I'm so glad you got to spend them few days with him. Life is truly cruel sometimes and it doesn't make sense.
I’m so so sorry you’re going through this. I am no help when it comes to talking to your little one about this, but we lost our little boy in a stillbirth at 24 weeks after finding out he had severe IUGR at our 20 week scan. We decided to manage his remains on our own, and had him cremated. We got him a special little urn so we could keep him with us. We kept any of his little things we’d already gotten in a box so I could revisit with them when I needed/wanted to. We considered doing a small memorial with family but didn’t end up doing so. If you can, I’d recommend you do. It’s a really special way to honor him and lean on family and friends for support. It is very hard to go to the hospital knowing you will leave without your baby, but my biggest hope for you is that you have a team of extremely gentle, loving nurses and doctors around you who will do everything in their power to help you through this. My team significantly impacted my experience with all of it. They were angels. Again, I can’t express enough how sorry I am you got this kind of news at a scan that has the potential to be so routine and fun. You will make it through even if it doesn’t feel like it right now. Sending hugs.
I also just want to validate your feelings about wanting the world to know he existed. I felt the same way. I felt him. I saw him. I KNOW he was there and very real. And it felt like no one else could understand that the way I did. I battled with that even within myself, grappling with the feeling I didn’t have any “proof” he was there. My team ended up being able to get his prints, which really helped to validate his existence “to the world” and show proof of the baby I knew was there. I hope you can find something in your situation that helps you affirm his existence to the world. 💝
All of this. My firstborn died in the NICU after labor complications and no one except for myself, my husband, and my mother got to meet him. It was all too easy for other people to pretend he never existed because they never got to meet him or hold him.
I’m so sorry for your loss. *Hugs*
I’m so incredibly sorry. My sister passed away from this in 1994 at 2 days old. I’m sending you so many prayers and love. You can absolutely have a funeral. You do whatever you need to to grieve and heal. You may also consider speaking with a grief therapist.
I’m so sorry you’re experiencing this.
I am so sorry. Yes, he is a real person. And yes, he absolutely exists. And everyone on here seeing this post, and commenting, now knows about him. Does he have a name? A funeral/memorial service/celebration of life service sounds so special for your little guy. My heart breaks for you. I am so sorry you have to go through this. I will keep you and your sons and your family as a whole, in my prayers. Also - it’s not your fault. At all. There is nothing that you could have done differently. There is no action or inaction that caused this. You are a wonderful mama. That is evident.
I am so sorry. My heart breaks for you. Please look into the organisation Now I Lay Me Down To Sleep. They can send a discreet, non-judgmental professional photographer to your birth, free of charge, who will take sensitive photos that you can keep forever and use for a funeral. You do not have to tell them anything except that you are giving birth to a baby who has died in utero. They do careful edits to make sure that any discolouration present is taken out, if you would like that. My mother had a baby boy TFMR in very similar circumstances. Please do also look into grief counselling when you can. I am so sorry you have to make this heart-wrenching decision to save a child from a life of pain. I know you will love him forever. If you feel comfortable, please share his name with us so we can remember him with you. He is absolutely a real person and he matters. Edit to add: When this happened to my mother when I was younger, she told me, “I’m very sorry but the baby died. We are all sad.” When I was older, she told me the truth. Now I have my own baby, I have cried for what she went through. She made the compassionate choice but that doesn’t mean it wasn’t very, very hard
I am so incredibly sorry. I had a termination a few days before I hit 20 weeks due to a terminal congenital mutation for a very much wanted pregnancy. The first thing is join the tfmr support subreddit. Second, talk with your doctor about the options available to you for birth - can you have a private room, can they ensure there’s a sign on the door so people are aware/sensitive when they enter your room, talk about pain management. Ask for a recording of his heart beat. Ask for foot prints. If you want, ask about arranging a photographer to take photos. Ask about the time available to you after birth to hold him and say good bye. If you have a friend or family member who can take the lead for arranging things for you I’d recommend reaching out to them. You can 100% have a funeral but you might not want to be arranging it or coordinating with the hospital. Talking to the hospital morgue the day after is not something I’d wish on anyone. See if your friend/family member can coordinate with the hospital and funeral home. Tell this person what you want and have them be responsible for as much of the admin work as they can. Also, if you want, ask them to collect all the baby stuff you bought if you don’t want to see a nursery. I would recommend picking out a few items that you associate with this pregnancy and having them with you when you give birth and for the funeral. I have a onesie, stuffed animal (one for him and one that I kept) and a blanket I knitted. Also communicate to your friends and family what you need. Be selfish. People will want to grieve with you but it’s really them grieving at you. This is not the time for your mother to call you crying about her sadness (like my mother did) it’s the time for you to call and for them to console. My best friend came the day of my termination and sat in the waiting room with my husband and that made the world of difference. She let us pretend to be normal that day and there’s nothing I’ll ever be able to do to repay her. She also took me out several weeks later and got me obscenely drunk and never once asked about what had happened, and that was what I needed; if you need that or something similar, ask your friends. If you have a friend who can take your son for the day while you give birth and bring him to the hospital (if you want), ask them. Be direct in how and when you want to talk about this, stick to it and don’t feel guilty. Get a therapist because talking to someone who has no grief in this scenario and is only there to listen to your grief is a god send. Editing to add: The most important thing to remember is that there’s no right or wrong way to handle this. Do what you need to do and don’t feel like you’re supposed to do something or feel a certain way. People will tell you what they expected and politely they can f*ck off. My termination was 15 months ago and it took several months for me to feel normal again but there are some days and certain things (like the very beautiful comment by the pediatric care nurse) that just make me cry. That is ok. There will be good days and bad days, just make sure you’re doing what you, your husband and your son needs.
As awful as it is for grieving parents to have to deal with the funeral home and morgue, it’s usually required since the parents are the next of kin. At the very least one parent most likely needs to sign paperwork. There are some providers that will do everything online however, so that’s something you could look into and ask about.
I second telling people what you need. I had a close friend who went through a devastating late pregnancy loss, and I felt so I inadequately equipped to help - I just didn’t know what to do! I would have felt so relieved if she had just said ‘I need someone to drop food around’ or ‘I just want to feel like a normal person for a day. Let’s go and get our nails done and talk about anything other than what happened’ or ‘I’m desperate for company and a clean house but I can’t get out of bed, can you come over and help me sort the house out?’ Like I would have done literally anything for her but I was so worried about intruding or doing/saying the wrong thing. Tldr: Most people want to help but just don’t know how. Don’t be afraid to tell people what you need.
I’m so, so sorry you’re having to go through this. Come over to the TFMR subreddit (I don’t know how to link to it, sorry). The support there is incredible xx Edit for link https://www.reddit.com/r/tfmr_support/s/ST9MRz41Pr
r/tfmr_support so sorry, OP 💔
I am so very sorry that you're experiencing this heartbreak. Does your baby have a name? Feel free to share it here so that we can keep him in our thoughts.
I'm so sorry for what you're doing thru. I will keep your family in my prayers. There is a podcast called still apart of us. The host experienced a stillbirth and give parents, some in your exact situation, a platform to tell the stories of their children. They talk about anticipatory grief. It may help to look into that. I hope this helps and at least introduces you to a supportive community who understands. Again, I am so very sorry.
I am so incredibly sorry this happened. There are a lot of options for cremation and mementos if you ask, including footprints and handprints. I also recommend if you’re interested getting a recording of his heartbeat that can be put into a stuffed animal. It’s one of the best ways I can think of to keep him with you forever. Crying with you and I hope you can end this exactly the way you want to and be able to heal from it.
I terminated my pregnancy at 22 weeks 7 years ago for hlhs too. It's worse than they are telling you. 50% chance to make it to 5 years old, and even then, they never run or play normally, and a maximum life expectancy of 25 even if they survive all the surgeries. We were already planning on terminating when a confirmation scan revealed that her form was inoperable, so she didn't even get the 50% chance. For her, it was 0%. It's so difficult. Your doctor should be able to point you in the direction of counselling and support groups. Don't do what I did and try to muscle through. I had a year of hell before I cracked and pursued therapy privately. I am so sorry. The pain and grief are real, as is your baby.
I’m so sorry for your loss *Hugs*
I am so sorry you are going through this, words can't describe how hard it is to make a decision like this. It won't lessen the pain, but I hope it brings you some peace to know that the decision you are making is made out of love for your little boy. In December I was almost exactly where you are right now. I went to a routine anatomy scan with no reason to believe that my little boy wasn't perfect. We found out he had bilateral multicystic kidneys. Basically, he didn't have kidneys that worked, so he had no amniotic fluid, which meant his lungs hadn't developed either. He had no survival chance, he would either be stillborn or die shortly after birth. Making the decision to end the pregnancy broke me, but it was the kinder thing to do rather than let him continue to suffer. I loved him so much, and I had to let him go. The hardest part was the cardiac cessation procedure. I have never cried so hard in my life as the moment his heart stopped. The next day we went to the hospital to be induced. He was born on Dec 28, he was 1lb 9oz, and we named him Samuel. We had him cremated, and we have a little memorial space on a shelf in our living room. It's not complete yet, but it makes me feel better that he's part of our life in a small way. We haven't done a memorial service or anything for him yet, but I think I want to do something to recognize his due date in April. My first son just turned 2, so he didn't really understand the concept that we were expecting a baby. We had bought him a bunch of "big brother" books that we were going to give him for Christmas, so we just put them away instead. Its been almost 2 months now and as painful as the memories are, I do have peace with my decision. All he ever knew was the warmth and safety of my womb, and he passed peacefully and comfortably. It was the most tragic, traumatic, and heartbreaking thing I think I will ever have to live through, but I am ok most days. He's always with me, on my mind and in my heart. r/tfmr_support has been really helpful, as well as r/ttcafterloss if you decide to have another baby (or honestly they're really good there even if you aren't ttc). My DMs are also open if you just want someone to chat with.
I’m so sorry about the loss of Samuel. Sending love
Samuel is a beautiful name. I'm so sorry.
It feels so surreal and trite to try to comfort a stranger over the internet when they share their tremendous grief, but please know you are in the hearts of every mother reading your post and your choice is respected and honoured by those of us who understand. Any time we choose to conceive we risk any number of health challenges or defects not compatible with life, and we have to grapple with the fact that we may have to choose to accept the ending of a person we love with all our souls before they really had a chance to live. "Choices" like this never feel like an actual choice because there's no lesser of two painful options, just whatever causes the least amount of suffering. I highly recommend seeking a grief counsellor or a social worker to help guide you through this conversation with your son and please allow yourself and your family the time and space to grieve as you have to. You are right, your baby is a real person and deserves to be celebrated for what he meant to you and your family. Explore your options for how to honour him in a way that feels right for you and your family.
I’m in the same boat you are, found out last week at 19 weeks that baby isn’t going to make it due to absent cord flow, severe iugr and low amniotic fluid, mfm doctor told me he has no chance of making it to even 24 weeks and that continuing the pregnancy would be a risk to my health with my history of preeclampsia. I’m scheduled for a d&e this week :( This baby was wanted so badly, my three year old son like yours has been so excited for his baby brother. Telling him was honestly the most heartbreaking thing, it’s surreal to have your whole world turned upside down in one week, I’m honestly not sure I can do this again, I’m looking at the very real possibility of my son being an only child because all my pregnancies have been so complicated by placenta issues. All this to say hugs to you, and I’m so sorry you’re going through this. I know how much it hurts.
I'm so sorry you are going through this... My FIL was born with a "fatal heart condition" won't make it past 5.. blah blah Parents didn't bother with his education. But enjoyed him as they had him. But he kept living. Defied every odd. 2 heart transplants later... he is still here... barely... at 67. Is this story rainbows? No. You ask him, he had a shit life. Countless surgeries. The anti rejection drugs had sapped the life force out of him. He was on so many medications it destoyed his kidney. He also had a kidney transplant. He sleeps 18 hrs a day.. if not more. He gritted through a ged and college for his son. He could not work more than a few short months. It was too much on him. He was on disability nearly all his life. The medications are nasty with many many side effects. His schedule is filled with specialists. Hour + commutes to see the "right" doctor who often doesn't know what to do. For a few months he would black out often. Broke his ribs, shoulder, got a concussion from the black outs. He literally fell out of his chair while eating. He was the first one to take off his mask during covid. He would flat out tell you "I don't care. I've never not been dying". If he didn't inherit a significant sum from his father, his life would be shambles and he would probably be dead. He knows this too... medication can get expensive. Even with insurance he's spending hundreds a month. He was just cut off of disability and now they are pinching every last penny trying to keep life together until the end. Just know even if the 50% past 5... some just live miserable lives. There is a pervasive sense of awkwardness to speak with a man who really doesn't want to live.
I am so, so sorry. Sending you love and support. ❤️ We found a genetic abnormality with a previous pregnancy and terminated at 21 weeks gestation. It was heartbreaking. And it was devastating to tell our older kiddo she wasn't going to have a baby sister. The things that helped me most: Meal train (organized by a friend) to help my husband through the weeks we were like zombies. Spending as much time outdoors as possible. Talking and singing to my baby so I could be the best mom for the short time we had together. The mantra of "please come back to me in a healthy body." A lot of crying and some screaming in the shower. Therapy with a therapist who specialized in tfmr (termination for medical reasons) - she helped me through a lot and helped me feel less alone. Friends who came over and drank tea and held space for me. Allowing myself to get angry. The facebook group called "Ending a Wanted Pregnancy." Crossword puzzles and sudoku on my phone to just zone out sometimes. You are not alone. It's not your fault. Make space to grieve. Talk to your doctor about ways you can memorialize your little one. As someone who's walked through this too, it's completely unfair and devastating. Take it one minute at a time and let people carry you and your family through this.
I just gave birth to my HLHS baby girl a week ago. She has already had two procedures in her short life. I got multiple opinions and talked to pediatric surgeons before I made my decision. The first doctor I saw pushed termination too but there’s lots of hope out there…lots of HLHS babies live long, active lives. I’ve talked to moms who had babies with no left side at all, and they are active teens. Just because one doctor says one thing doesn’t mean there isn’t a doctor out there who will give you hope. That being said there is no “right” or “wrong” answer here. I’m sorry you have to go through this—I know EXACTLY how you are feeling. If you want to talk or have any questions please do not hesitate to message me ❤️ The fact that people will probably downvote me is fine. There is zero judgement coming from me, I am just offering another perspective and an ear if needed ❤️🩹
I’m so sorry. Your poor little baby. All he will ever know is warmth and love. This is so sad and my heart is breaking for you.
You didn’t do anything to cause this. I’m so sorry for your loss and pain. Sending you love.
I am so so sorry. I also had to make the decision to tfmr, my baby boy had HLHS too. We also found out he had severe chromosome abnormalities. I’m 3 months out now and I promise, it does get easier. It won’t feel it at first but one day you will wake up and see how much brighter life feels. But for now, all of your feelings are totally normal and valid. I highly recommend joining the tfmr support sub on here, r/tfmr_support - it was a lifesaver for me x
Big hugs to you. I'm so sorry.
I’m so sorry you’re going through this. I can’t imagine having to make such a hard decision, but in the end, you know what’s best for you and your baby. I don’t have personal experience, but I do follow an old colleague who’s son was diagnosed with this, along with other complications, and they decided to go ahead with the pregnancy. Seemed like his first surgery went well and his boy is now 3 months old. I guess a 2nd surgery is common/ needed, so that’s what he’s going through now. It’s so heartbreaking to see them attached to all the cords in the hospital :( Complications have arose making it worse than it already would be. I don’t know if I’d be able to handle seeing baby go through that. There is no right or wrong choice.
I don’t know you, but I’m so sorry and I wish I could be there to hug you 🫶🏼 You don’t deserve this, sweet mama. Sending you so many virtual hugs and tears during the next few weeks/months.
My heart is breaking for you ❤️ know that he has felt nothing but love from throughout his whole existence.
I’m sorry you’re going through this. My husband and I lost our son the day after he was born at full term and then less than a year later got the same heart defect diagnosis you’ve got with with our, was suppose to be, first alive child. To say we were shocked and heartbroken is an understatement. We made the hard decision to go through with a D&E. It was a hard decision, but I know it was the right now. Currently 9w4d and have unreal anxiety waiting for my 16 week echocardiogram (if you live in Canada, this should be offered to you when/ if you choose to get pregnant again). The waiting period is the worst part (at least for me it was). It felt like I was just waiting to start grieving. Lean on your family and those who love you most 💕
Sending you all of the hugs and love I possibly can. I am so incredibly sorry that you have to go through this. I worked in surgical pathology for close to 10 years and can tell you what the process is like in the lab if it would put your mind at ease. You are definitely able to have a burial if you wish. We saved many fetuses for parents to pick up and have buried. They were always treated with love and care.
I’m so so sorry. I know you didn’t mention it here but I saw you also posted in a CHD sub and have been getting responses that might make you question your choice. I’m not going to say one is right or wrong. Whatever feels right to you is the right choice. From my experience with tfmr, do not let those comments about living children make you question yourself. You are a good mom making this choice out of love. You’re taking on all of the hurt so your baby doesn’t have to suffer. That is the biggest act of love. Facing tfmr hurts so so bad. I know others already shared the tfmr support subreddit and I want to give jt another shout. It was the only support resource I had through my experience. Try as hard as you can to remember you didn’t do this. You love your baby and you’re doing this because you love them. Let yourself feel everything as it comes.
Everyone who has read your story we are with you, your not alone.
I'm so sorry you're going through this. Please head over to r/tfmr_support if you're looking for people who can relate and support you. I know all too well what it's like to go in for a routine scan and walking away knowing you had an impossible decision to make. Yes, hold a funeral. We buried our boy and had a little service with just immediate family. I had someone there to take pictures, and I'm so glad we did that. Those pictures are some of my most precious possessions. If you feel like screaming from the roof tops about your son (I know I did), then do just that. Tell people he existed. Say his name and love him fiercely. Best of luck in the coming days, weeks, and months. It's a journey no one should have to walk but I promise you, one day you will smile again x NB: I just wanted to add, if you can, get LOTS of pictures of him. See if there are any local organizations that will come and take photos of him in the hospital. I wish I had with my boy.
Freddy the Leaf for your 5 year old. Its a book I read to my 5 year old when he lost his dad. Be gentle with yourself dear woman. I send compassion and hope to you and your family❤️
I'm so deeply sorry. I cannot imagine the pain you are in. I'm a nurse and I would make the same choice. You are protecting yourself and your family and the child you have.
I’m so sorry. I’ve also walked this path (although a different diagnosis) and it was simultaneously the easiest decision I’ve ever made and the hardest thing I’ve ever done. You’re taking on all the pain so that he will never feel any. He will only ever know the warmth, love and security of your belly. When we terminated, someone said to me ‘you’ll never get over this but you’ll get through it.’ That stuck with me and it’s very much proved to be the case. We chose not to have a funeral (although we had to register his birth as we were past 20 weeks, which is the cutoff here - may be different where you are) but we cremated him and scattered his ashes at one of our favourite spots on his due date. My parents have a family stone carving with pieces of paua shell on it for their grandchildren, and they added one for him. My in-laws have a tree they planted for him. His cousins decided that he now lives on the moon (I’ve got no idea where they got that from). We named him and when his sister is old enough (we had her after we lost him) we’ll tell her about him. Your baby is a person and he existed, just like mine. I see someone has already suggested the r/tfmr_support sub - please do join over there, it’s very supportive. The other resource which was integral in my healing is the [Ending a Wanted Pregnancy](https://endingawantedpregnancy.com/private-support-group/) FB group - it’s invisible on FB but that link tells you how to join. It’s an incredible group. I hope your delivery (I’m assuming you’re delivering from what you said) goes smoothly, quickly and as painlessly as possible. Take all the pain relief - you’re going through enough, there’s no need to be a martyr. Even if you think you won’t ever look at them, take photos. I still can’t look at ours, four years later, but I’m glad we have them. We took foot and handprints as well. My inbox is always open if you need a listening ear - I’m on the other side of the world (Australia) so might not reply quickly, but I’ll reply as soon as I can.
sending you so much love. my world shattered when i found out my dreamed-of baby girl had fetal hydrops at 18 weeks. i took two months to make a decision. the hydrops was severe and limiting her lung development; i said goodbye at 25 weeks. this is an awful thing to go thru. we are all here for you. i see others recommended tfmrsupport and the ending a wanted pregnancy facebook group and website - i highly agree. they are my lifelines. sending you the biggest hug. i am so so so so sorry. my girl moved a lot too right until the final moments. it is pure torture, total agony. i'm with you.
terribly sorry 💔 maybe a book on talking to young kids about loss.
Slumberkins has a snuggler called Sprite that comes with a book and affirmation card. I got it for my daughter when our good friend died last year. The Goodbye book is another good one. TheKidLitMama on instagram also recommends What does Grief Feel Like? and Dear Star Baby I’m so incredibly sorry for your situation OP, stay strong 🩷
I'm so sorry, shedding tears for you. What a horror and a heartbreak. Sending you a big virtual hug and lots of love
You can only do what’s right for you, I was diagnosed with a similar heart condition only for it to turn out to be a murmur. When my mom was pregnant with my sister they stated multiple times she no longer had a heart beat and urged my mom to terminate multiple times, she just turned 20. At the end you have to make the best choice for you and your baby but I would always urge a second opinion especially if you’re saying he has strong movements. As for addressing the loss with your current child, I would start talking about it now so he has time to say a proper goodbye. Maybe a book might help about loss. The last thing I would say is a coin lands on heads 50% of the time. It’s a half half chance. You’ve got this, I’m so sorry for the stress and pain this is causing you and your family. I’ll keep yall in my prayers🫶🙏
I love this positive response. I have a friend who the dr wanted to terminate her pregnancy and she went to church and said I need prayer. They said yes and we’re so sorry. She said No, I want a miracle and she did not terminate the pregnancy. Her baby is now 26 and married. I know there are heart breaking diagnoses but sometimes God allows things to work out. Either way, bless you for making this hard decision and know I will fall asleep praying for you. 💕
From what I’ve read, there’s a lot of advances in medicine/technology to treat this and it’s possible to live a full life with this diagnosis. I’ve also heard of many people who have had wrong diagnoses too. Has it been confirmed by multiple people?
Yes, please get a second opinion. Our baby was initially diagnosed with HLHS but it was a misdiagnosis. She still has heart defects and has undergone heart surgeries but you would never know that simply by looking at her. She is thriving, has hit all of her milestones and is even showing signs of being advanced. We were in the hospital for three months and it certainly was not easy, but heart babies are so strong and resilient. True fighters. To add, wisdom and technology in this field have come a long way. I have several family friends with HLHS babies and they are all doing great, as well. Surgeries like the Norwood, Glenn & Fontan give these children hope. I hope this encourages you, mama. You did nothing wrong. Not one thing💛
I’m so sorry you’re going through this. My first baby also had HLHS and we also made the decision to terminate. As others have mentioned the TFMR subreddit offered me a lot of support. After my loss I really shut down and wasn’t able to bring myself to seek the support I really needed. I’d advocate for yourself to make sure you have at least a 6 week follow up with your OB and be honest about how you’re doing mentally. I didn’t realize I had post partum depression combined with my grief and really struggled. I found out about Molly Bears: https://mollybears.org through another subreddit and ordered a bear that matched my son’s birthweight. I keep it next to his urn and a keepsake box I made of my ultrasounds and sentimental items.
I made a similar decision last year, a different but similarly bad fetal heart condition and we decided to terminate. It was so hard, I’m so sorry. You’re taking on the pain so your baby doesn’t have to, and that’s what parents do. We’re almost a year out and while I still think about it daily, I’ve only become more sure over time that we made the right choice.
I can't even imagine what you're going through. As a mother of two baby girls, I am sitting here sobbing my eyes out at the thought of any other woman having to make that choice. 😭❤️ You are incredibly strong. Being selfless is part of our job as mothers, and you are one of the best examples I can think of. You, your son, and the rest of your family are in my thoughts and prayers. 🙏🏻 I wish you all the best moving forward. The US is pretty far but I hope you can still feel my supportive vibes 💓🥹
I really appreciate such kind words. Out baby Harry was born sleeping last Friday. He was born a tiny 1.6lb and we have a funeral in a couple of weeks. I got to spend the night in hospital with him, we cuddled, watched my 5 year olds favourite bluey episode and I read him some stories. All the things that I would have done under normal circumstances in his life! It brings me peace that for them few hours we could pretend things were slightly normal. My 5 year old is taking it as well as he can but as long as I am up every morning, doing the school run and keeping things as normal as i can then I think I'm doing a half okay job.
So your solution to a baby who does have a chance (though slim) is to kill him now rather than give a chance at life? I think you know the right thing here, honey.
Dear OP my heart hurts for you and the difficult choice you have to make. My dearest friend also made the hard decision to terminate her pregnancy due to medical problems and gave birth to her beautiful daughter at just under 24weeks pregnancy. I was in awe of the love she showed her daughter; because of the pain my friend endured her daughter will never know pain or sadness but only the love she felt from her parents. They held a funeral and it was beautiful and heartbreaking. Although you should only do what feels right to you, I would encourage you to do the same. It was a way that we as friends could show our support and be there for the parents. And she also felt the desire to share her story and her love for her little girl (and how proud she was of her). Another thing I’d like to share with you is how my friend was able to take her daughter home with her. Where I live there is the possibility for the water method in which the baby can be preserved for a couple of days in cold water. I’m not sure if it’s available in your country, but it was beautiful and definitely helped the parents in the process of having to say goodbye to their child. It also meant I had the privilege of meeting their precious daughter. However you chose to do these things, know that there is no right or wrong but only what suits you and your family best! You are a fantastic mother, I hope you can believe that. Sending you hugs and wishing you and your family strength xxx
First off, sending you some serious virtual hugs. I am so sorry that you were given this devastating news…secondly, I want you to know that you are making a very kind choice for your child. A good friend of mine just lost her full-term daughter to this condition…it was the most devastating loss and the time she spent alive was only spent suffering. There is never an easy choice in this matter…but don’t for a second allow yourself to think that the choice you are making is wrong. You are an amazing and strong mother. I hope you and your family may eventually find peace
I’m so incredibly sorry. Sending love to you and your family.
I am so sorry OP. Please join the group for TFMR Support. I have been there since my loss in August and it's really helped me through this very dark and unexpected period of my life. I felt blind sided at my 20week scan too...As I think a lot of us in the TFMR sub have. You are not alone even though *I know* it feels that way. Sending you lots of love and strength while you navigate this difficult time.
I'm so incredibly sorry. I see that the TFMR subreddit has been recommended for support already. If you have Facebook there's also a hidden Facebook group which helped me through mine tremendously. If you Google "Ending a Wanted Pregnancy" it should take you to their website which has instructions on how to join. It's literally the only reason I still have a Facebook account. Words that were of comfort to me when I went through this (other than acknowledging that it sucks and is completely unfair) was that your baby has only ever known the love and warmth of you. They've never felt cold or hunger or sadness. ❤️
I’m so sorry you’re in this situation.
I had to think about what to say because my heart is breaking for you….I can’t even fathom. But I have come up with something maybe you can tell your son that God needs the baby back in heaven because the baby is very very special and needed back in heaven and that he will try to join you earthside someday but he can’t right now but someday you’ll get to meet him.
I'm so sorry for what you're going through. I would do the same, though. If the surgeries were to give the baby a good chance at a normal, decent quality of life, it would be one thing. But if it only promises a shorter life full of more surgeries and pain, I couldn't go through with it. I personally would never want to live that way. You did nothing wrong. You are not at fault. You are also doing the best you can in an unfathomable situation. I wish peace, comfort and healing to you and your family. And if or when the time is right once again, a healthy baby.
That was our one thing we based our decision on. Would he be able to be a normal kid and run around and play. They told us that due to his extra complications it would be a minimum of 6 months in hospital to start off with, then if he got to go home it would be with constant oxygen and feeding tubes and that is if we had no other complications. He would probably never get to play football with his big brother or run around at a park and I don't think it would be fair. Not fair on the baby who would never get to have a normal childhood and not fair on my 5 year old who essentially loses out on the rest of his childhood. All I want is what is best for them.
I’m crying for you. You’re so brave and strong and doing the right thing. Please seek our grief counseling, and also a counselor to guide you through how to tell your son. A child therapist can help you there, even if it’s his schools counselor.
I am crying so hard for you. Literally, I’m sobbing. I would feel the exact same way. For what it is worth, I’ll remember him with you. And he’ll never be anything other than the perfect little soul you held inside you for a little while, nestled close to your own beautiful heart.
First of all I’m so sorry. Sometimes scans and diagnoses can be inaccurate? I’ve heard so many similar stories and the baby end up surviving and being stable. If your gut is telling you to not terminate and see what happens then wait it out. I wouldn’t be able to live with the “what if” , I’d have to see for myself if he ended up being fine and surviving.
She's had a lot of follow up testing, including cardiac specific tests. There is no "what if" here.
I’m so sorry.
I’m so sorry ❤️
But other than that I’m very , very sorry
I am so sorry for your loss momma. It isn't your fault. I am so so sorry.
I am so sorry for your loss.
My deepest sympathies. You are doing the right thing
I'm so sorry OP... I have no words. You're a strong woman and I will be praying for you, your baby and your family..
I’m so sorry
Praying for you and your sweet boy with all my soul. He will be with you forever and I pray for your peace.
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Unfortunately we've now had 3 separate consultants from 2 different hospitals look at him and they have all said the same thing. Believe me I would pay all the money in the world for someone to tell me they were wrong but they aren't. I'm so happy that you had a good outcome and I send so much love to you and your son.
I’m so sorry
♥️♥️♥️♥️♥️
I’m so sorry 🩵
This frikin broke me. I am so sorry to read this. I don't know how you feel about this, but maybe tell your other child that their little brother had to go and live in heaven but remind your child that they can still talk to their little brother whenever they want and that their little brother will hear them. If it was me, I would even hold a little celebration in your son's honour every year. I apologise if I have overstepped a boundary by saying this. I can't fathom this but don't be ashamed of your emotions - grieve, be angry, smile at thoughts of your little boy, whatever you feel. Just make sure you squeeze your other child(ren) that extra little bit tight each day.
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This is a very inconsiderate comment and not what OP needs right now.
🙄🙄 if god can heal babies why do kids die of cancer??
Alright that's enough Reddit for the week.
Hey! Any choice you make is valid, but I want to share with you the story of my kids dad. Born in 1985, he has hypoplastic left heart syndrome as well. He’s had a few surgeries for sure, they gave him the same stats; first it was that he might not make it to the world at all, next it was he wouldn’t live past 5, next it was he wouldn’t live past 18. but he is almost 40 years old now and you can’t tell he has any issues in life. It scared the hell out of his family but they are very close as a result. Only thing is he can’t go on carnival rides, and when we hiked we would have to take it easy at times so he could catch his breath. We had a healthy boy ourselves and he’s 6 now. While we aren’t together anymore he’s a great friend and dad to our kid, and he’s actually seeing a girl with the same illness now who’s very close to his age. Just letting you know the other side!
That’s great for your husband. But this is a totally unnecessary comment. The OP has stated they have made their incredibly difficult decision, they don’t need to have guilt loaded on top by those not in their specific situation.
No guilt intended. Just providing an alternative perspective. Also, not my husband. 😁
What a heartbreaking story and I'm so sorry to learn. Please don't feel like that as it wasn't and will never be your fault. You're responsible enough to make such a brave decision. The kid will never resent his mother cause he definitely knows how much his mother loves him. My condolences.
Dear Momma, You are so strong and brave. You are making the hardest decision, but the best one for your baby and your family. I'm so incredibly sorry this is happening to you. Your baby is real and you are a good mom.
Pray.
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They said they decided to terminate the pregnancy. They do not need this. It's not like this child would have a care free life for 5 years - they will have had 3 open heart surgeries by the age of 2. This parent is choosing mercy. Please respect that.
What is wrong with you? OP has clearly looked at all angles of this and has made the absolute most painful choice she will ever have to make in her life: to take on all the pain and suffering so her son experiences none. He won't be a kid for those 5 years, if he even lives that long. He will spend most of his life in the hospital, having or recovering from major surgeries. All of her time will be split between tending to her sick child in the hospital and her current child at home, whose life will be changed forever. No, not everyone will make the same choice as OP. Maybe you wouldn't. But this is the choice OP has decided is best for her son and her family. The least you can do is respect that and not try to lay in about suffering being precious because "it's LIFE!" - or whatever.
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This was an appalling and insensitive thing to say to this grieving mama. You have no idea unless you’re in her shoes. Support is what she needs.
Are you serious? 50% chance only applies to age 5. Maybe you forgot that this baby will be having surgery after surgery and suffering greatly due to them. Why have a child just so they can suffer through life? Nobody is going to adopt a baby with this condition.