Losing our little baby boy to Edwards Syndrome - NCT

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Losing our little baby boy to Edwards Syndrome

Anon1029 profile image

Had our 20 week scan Monday and was referred to London for more scans with Edwards syndrome. My little baby boy is a wriggly active baby and I feel him move quite often but yet he really isn’t very well. His brain and heart are severely defective and they say his heart could just stop any minute. We have had the agonising decision as to whether to end our pregnancy. This is our third pregnancy but yet still not baby. 1st was ectopic and 2nd was a missed miscarriage at 11 weeks. Now at 20 weeks we have to say goodbye. I’m broken inside and feel my world is ending.

Has anyone else been here and had to make the same awful decision? Either way we are without our baby. The choices as to how and where to have the baby is also agonising. Surely in this world there must be a kinder more sensitive way for women like me to bring their lost little one to their arms.

I’m just sick with emotion and torment and utterly heartbroken

37 Replies

I have no advises for you but couldn't read and run. Just wanted to say that I am really sorry that you have to go through all of these hard decisions. There are no right words to describe your feelings right now probably, but I want you to stay strong ... I experienced myself 3 chemical pregnancies and I can understand... You are not alone! Sometimes God prepares things for us that we never believe that will happen...so don't lose your hopes. I am sending you a massive hug and don't forget you are stronger than you think ❤️🤗

I’m so sorry. My sister had to end a pregnancy due to a neural tube defect detected at her 20 week scan. I know it was a very difficult experience for her and we still talk about her little boy Charlie as a family. She went on to have another baby boy after her loss.

ARC (Ante Natal Results & Choices) have a helpline and a forum which I know my sister found extremely helpful - that will connect you to support and other women who have been through the same thing. We also fundraised as a family for Sands who support families through the death of a baby - they created a memory box for Charlie after he was born.

I’m so sorry, your heart must be broken in two. Look after yourself xx

Anon1029 profile image
Anon1029 in reply to Llizzie

Thank you so much for your kind message. We have been given details for ARC through a booklet which has been helpful regarding next steps but yet even those all have the ending that I don’t think anyone in this position really wants.Once you hit that 20 week mark the options are just heart breaking.

I will have a look at the forum and Sands I feel it’s comforting knowing we aren’t alone in our thoughts and situation. I also feel a memory box would be a lovely idea.

We have our name for our baby. He is little Leo and will always be remembered. We have the most clearest and most perfect looking scan picture. You just wouldn’t believe there was anything wrong with this precious little boy xx

This is heartbreaking hun I thought I had been through a lot with 2 ectopics and multiple miscarriages having to make that decision is just horrible I’m thinking of you and what a horrible situation to be in ! What I can say that’s positive is don’t give up like ever I felt like it and have a 4 month old baby girl it was a journey and a half and still even tho she’s here I live in fear something will happen but I never gave up even though I thought it would never ever happen xxx

Anon1029 profile image
Anon1029 in reply to Cmc2020

Thank you for your message. We were too very anxious throughout but as we hit each milestone we could feel more invested and more love. After the ectopic our first concern was whether the pregnancy had implanted correctly and as a bonus had a heartbeat. Tick at 6 weeks. Ultrasound at 8 weeks showed no heartbeat. Then came the agonising few weeks of waiting naturally until at 11 weeks I was left empty.

With Leo we ticked, ticked and ticked again at 12 weeks. Everything was perfect. He was literally bouncing off the walls in the there. Was amazing. He was hilarious at the 20 week scan. Spinning 360s making it so difficult.

I was there for 3 hours having to return after jumping, walking, eating choc and fizzy drinks to get him to move position. After a second opinion we broke the news. By this point we were fully invested. We had looked at buggies, cars, nursery furniture. It’s taken me over a year with a counsellor to allow myself to fully invest my head and heart into a successful pregnancy and then my heart is broken again.

I’m nearly 38 and know my risks are higher with these problems but I so desperately want to feel my little baby in my arms.

Xx

Hi I know you have wrote if anyone has been through what your being through but after reading about what you wrote I couldn’t just keep scrolling without saying I’m so sorry this has happened to you! No mother should have to go through this! I can’t imagine the hurt and pain you must be going through! Once again I’m so so sorry. X

Thank you….I feel like I use the same words…devastating and heart breaking. After suffering a couple of previous losses I just cannot compare the pain I feel for this little boy. He is a human, he is alive, he is moving. The love we have for him is just immense. I’m so grateful for your message xx

Aww I feel your pain! I’ve had a few miscarriages myself and it’s a painful experience to go through but it’s nothing compared to what your going through right now! I would say keep onto that hope that he is still fighting away moving around! Miracles happen! But this is completely your decision but I’ll keep you in my prayers and thoughts xx

There is nothing they can do. He is highly unlikely to survive the pregnancy with all the problems he has. If he did which would be miracle in itself, he will live for a few hours. I just cannot go through that pain. It’s pure torture feeling him move knowing I will never have him in my life fully xxThank you for your thoughts and I’m so sorry you have experienced loss xx

Oh gosh that is just awful! My heart breaks for you honestly! To have the excitement of it all to be taken away! I just can’t imagine what your going through right now! Do you have enough support at home? And I’m in no doubt that the hospital will put you through to a professional to help with it too! Any loss is painful just know if you ever need a chat I’m a message away ok xx

Yea I have my husband who is amazing but also devastated. He has managed to let go of his emotions over the past few days and it’s been comforting to have him cry when I’m all cried out. We have a fantastic friend and family circle…we really very lucky in that sense. Everyone is just numb and lost for words. I really appreciate your offer of support. XX I would also like to return that offer xx

That’s good to know that you have such a lovely and supportive family and friend unit! Your very lucky! Aww yes it will be just as hard for your husband so it’s good you have all that support! Sending you all the love and strength at this difficult time xx

I am so sorry to hear this. A massive hug for you, DH and the baby.

Sorry don’t have any sound advise, just wanted to reach out and let you know that I will be thinking of you 🙏🏾

Anon1029 profile image
Anon1029 in reply to JoyfulStar

Thank you so much. I will pass your message to my husband. He is truly heart broken and loves this baby so much. I think sometimes we forget the pain they too are experiencing. Watching us suffer real excruciating pain and not being able to help or fix it. He is amazing. Thank you four thoughts xx

We did receive the call from London yesterday to confirm after tests that it’s 100% Edwards syndrome-Full. He has a missing csp and absent corpus callosum with interhemispheric cyst. 4 chamber view of the heart is abnormal he has a hole in it and 2 chambers aren’t the right size and other bits haven’t developed, vessels abnormal including double outlet right ventricle VSD, and extremities are cleft hand/fingers, left, clenched in a fist and growth restriction, his little legs aren’t growing as they should. He also has apnea and kidney problems. The chances of him surviving the pregnancy are significantly low let alone birth. We have to make the god awful decision to end the pregnancy and say goodbye to our baby boy. Xx

Hi I’m so very sorry for what your going through & having to make these awful decisions, no parent should ever have to lose a child especially after your previous losses, when you attend each scan & each milestone hoping all is well & allow ourselves to relax & actually enjoy the pregnancy we get attached & fall in love & plan all the things for our babies. My situation is different to yours but we have recently lost our daughter 4 weeks ago today 🥲 , I was 34 weeks with a perfect pregnancy no known issues, I went to hospital & they told me her heart had stopped, devastated beyond belief & still in shock , she was still born on 18 sept , our beautiful girl. I had suffered placental abruption, severe preeclampsia & nearly lost my life. Before that day I’d had no symptoms at all , they say it was a very tragic & rare occurrence that I could have done nothing to have saved her .

We did get to meet her & have a lovely memory box & had wonderful midwives who were very comforting which did help .

Some advice if possible in your situation is to make memories, take lots of photos & spend precious time with your baby , we got to have 3 days together in the hospital & do things like read her a story , change her clothes & have her handprints & footprints to keep . These are the comforts we cling on to in these dark days. Every day is a struggle we feel our lives are just empty & future has been ripped away in an instance. There is plenty of support out there like sands

I’m so sorry this is happening to you xx .

Anon1029 profile image
Anon1029 in reply to butterfliez

I have tried replying to your message multiple times. I am sorry if it has felt that I have ignored you. I am just totally lost for any words. I still haven’t got what I want to say ready for typing. I just had to say something for now. I’m so sorry xx

Anon1029 profile image
Anon1029 in reply to butterfliez

We have just been to the hospital for the first part of this awful nightmare. They have gone through what we can do like a memory box. Due to our past we weren’t prepared to buy anything for baby until after the 20 week scan. We have nothing that is his and can’t face buying anything, trawling around baby sections. We have a good friend of ours who had made us a blanket so we will be using that and we have the cards from the flowers and his picture. It’s difficult to know what to do without feeling like we havent done enough but then there is nothing we really have other than our love. We didn’t think it was possible to love someone we have never really met just this bouncing black and white picture.They have asked us if we would like to see and hold him. It broke my heart. I’m just not sure I can handle this part. I feel terrible I just don’t know what the right thing is to do xx

butterfliez profile image
butterfliez in reply to Anon1029

Im so sorry it’s just so heartbreaking especially as your still carrying your boy & having to make unbearable decisions, we often wonder why these awful things happen to good people It’s really difficult to know if you want to meet your baby , before it happened to me I would have thought I couldn’t do it ,

But We found pure comfort in meeting our baby girl, to get to see what she looked like & to hold her will forever be the best memories , I thought of it as getting the chance to say hello before having to say goodbye . Of course you must do what you both feel is right.

Don’t be worrying about items for your son , a blanket will be perfect , we didn’t have any thing small enough so we wrapped her in a blanket.

Just know Your baby will only ever know pure love ❤️ he will not know pain or suffering or any bad things from this world , he will only know pure love from his parents.

The love we have for our babies will live on with us , we will never ever forget them ,we are there parents, we will always be there parents & they will always be our children 💙💗

People keep telling me how strong I am , even though I don’t feel strong at all , I don’t want to be living this nightmare, I wake every morning hoping its not real. My baby girl would be due in 10 days.

Now my life feels empty, but my heart is full of our daughter, the memories of my pregnancy her kicking away were the best 34 weeks of my life.

Hold on to these moments.

I send you strength & comfort for what happens next , always here if you need to chat xx

Anon1029 profile image
Anon1029 in reply to butterfliez

Thank you and again sorry to hear you have lost your little baby. To carry her all that time. Do you know why she didn’t survive? I really am battling with the idea of seeing him. The difference is he will be 21 weeks, so much smaller and very dark. Even though he is my baby boy I fear that the very tiny image of him is just not what I could cope with. If we were further along like yourself I wouldn’t even question it. I would hold him and dress him and have prints taken and take in his little face. Working out who he looked more like. He will be too small to dress too small for prints and so fragile. He will be slightly bigger than the length of my hand. The picture I have of him is this bouncing baby inside me. The picture on my profile is the very last picture of him drinking. He was a bugger for every ultrasound. He made us laugh during those appointments. I think I want to hold onto those images and memories.

I used to love feeling him move and now I just feel like those feelings are taunting me. They have said it’s highly unlikely with his conditions that he won’t make the labour but if he does he may let out a squeak. I’m just so scared of hearing something I could never unhear. It’s not what I want for him. I’m just so sad. Xx

butterfliez profile image
butterfliez in reply to Anon1029

I agree with what your saying your son will be so much smaller & if you feel you don’t want to see him like that then that’s totally the right thing to go with , remember him how he is in your tummy with all the lovely memories from your 20 weeks together ( prior to his diagnosis) the scans &everything in between. My heart breaks for you 💔. It’s awful for any one to have to lose a precious child & to have to make decisions & having to go through birth.

Be strong together you & your partner talk to each other & comfort each other the best you can. That’s what’s been helping us get by each day.

Baby Leo will always be with you

Sending a big hug for the next steps xx

Anon1029 profile image
Anon1029 in reply to butterfliez

Sorry you have said in your previous message that there were no known issues. So sorry xxx

butterfliez profile image
butterfliez in reply to Anon1029

Yes her heart stopped when I got to the hospital she’d just gone , I’d had a silent placental abruption a total shock. I’m currently awaiting a review with hospital to go over everything after they do all the investigations & tests. This was an ivf pregnancy too , we’ve been ttc for 7 years never had a natural pregnancy, had a failed ivf round , diagnosed with endometriosis after surgery & lots of waiting due to covid. She was our miracle & always will be 💕x

Anon1029 profile image
Anon1029 in reply to butterfliez

Sorry for the long delay. I was admitted Thursday for induced labour. I decided I wanted to see our baby boy after reading your comments. He was born Thursday night 21/10/21 weighing just 0.7lbs. Everything went as well as it could, he really wasn’t well and like they said he didn’t survive the labour. He was bum first…again not being straight forward like he hasn’t been from the beginning which made us smile. Bottoms up to the world. Every scan he tried declining and facing away from whatever they wanted to look at. They cleaned him up and wrapped him in the blanket our friend made. He was so tiny, ridiculously tiny. Had the most awesome eyebrows and tiniest hands. We could see they were cleft. His fingers so small.

Never thought it would be possible to see a baby so tiny. The midwives offered us everything, clothing, sleep pouches, they talked to him like he was alive and with such respect.

They treated my husband no differently to me. We managed to put some laughter through the labour…especially when I was conscious of my breath so asked for a breath mint while I was breathing deeply the gas and air through the contractions. The midwive dug out a humbug :)

I’d relive it all over again. The togetherness I felt with my husband and our tiny baby boy. I don’t regret seeing him and having him sleeping so peacefully beside us overnight.

Choosing little things to have with him.

I sleep with his blanket every night. I needed it home with me. We chose a very small one to keep him warm.

I look at his pictures and his tiny feet prints. No bigger than a Cadbury’s chocolate eclair.

We got to say hello and goodbye and embraced the time together.

Thank you 💙💕💙💕

Picalilli99 profile image
Picalilli99 in reply to Anon1029

❤️❤️❤️

butterfliez profile image
butterfliez in reply to Anon1029

I’m so glad to hear you found comfort in meeting your precious baby boy 💙 & had those special moments as a family together that will stay with you forever as precious memories. It’s nice that you had midwives who treated you with the upmost compassion, I found this is what helped us through those days in hospital

Your tiny beautiful baby boy sounds perfect. Keeping his blanket for comfort is a lovely idea , I have a little blanket & teddy that I sleep with every night too 💕

It seems silly to ask how your doing , but I hope your recovering physically at least. Take each day at a time & talk about your son together.

We have to bury our precious daughter tomorrow, trying to find the strength to get through .

Take care lovely xx

Anon1029 profile image
Anon1029 in reply to butterfliez

Oh my goodness! You must be experiencing so many emotions. I can’t even imagine. I really hope you have as beautiful a day as you can for your little girl. I’m not sure how you will find that strength but you will. You have come a long way through the grief journey and you sound so very strong! You have helped me through such a difficult decision. You will do this. I don’t know how any of us manage to get through day by day but are so strong. You will have strength together as a family also and you will get through this.

I know there are no words that can help or make anything as you want it.

Friends and family ask every day what they can do for us and the answer is nothing unless they can bring my little boy back to me and I know that’s all you could ask for.

I’ll be thinking of you tomorrow with a heavy heart 💕

I don’t know if I would’ve held Leo or spent that time with him without reading these responses. They have really made me rethink how I feel. Or at least thought I felt in the moment. It’s comforting to know I’m

Not the only grown woman here who sleeps with what is now my comfort blanket.

It’s breaks me every time i hold it and know one day I will need to say my own goodbye to this comfort to allow myself to move forward. But for now it’s the saddest yet hugest comfort I possess. I just hold it so close.

Today has been a really difficult day and no matter how hard I try I cannot bring myself to the surface. I’ve cried and sobbed and died inside today. My heart is aching terribly.

Physically I am ok. Being jabbed daily by my husband with blood thinning injections but my body is doing as it should.

Emotionally I’m broken. I cannot describe the pain I feel today. It’s just pure sadness. I never thought I knew what a broken heart felt like until now.

Please let me know how you are doing after tomorrow.

Have you seen the book Saying Goodbye by Zoe Clark-Coates? We got given this when we left the hospital

All the best and we will be thinking of you tomorrow 💕💕💕

I'm so sorry it is such a dreadful loss, we lost our daughter Amelia at 20 weeks pregnant last November. We found out at our 20 week scan she no longer had a heartbeat. The shock we felt ( and still do) is overwhelming. Her full post mortem revealed no obvious reason why she suddenly just died just "these things just happen. " I still 11 months on really miss her everyday, I do not have one day where I do not miss her and the future we should've had with her. We have our 2 year old daughter Francesca ( after a 7 year struggle) and kept going for her sake but it has not been easy. The pain of losing Amelia will forever live in us. Like you said they are fully formed babies at this point and no one ever expects to lose a baby so late on. We have had 2 chemical pregnancies ( one before Francesca and one after Amelia) and a loss at 6.5 weeks after our second chemical pregnancy. And I can't even compare the early losses to Amelia- there is no comparison. With Amelia she was a fully formed baby and I had to birth her knowing that she was dead. And hold her in my arms telling her I will always love her. Anyone who says a loss is a loss hasn't had the misfortune to lose one so late. I count myself lucky compared to women who lose one full term thinking all is ok. We got referred to miscarriage specialist after three losses in a row but all tests came back clear. We tried again and I'm 21 weeks but every day I'm scared it's like a white knuckle ride and although I'm incredibly grateful to be pregnant I'm scared it will go wrong again. I analyse every move my baby makes. The medics have been so supportive and next time going forward you will have more support with another pregnancy. A loss like this is a loss like no other no parent should ever lose a child 💔🥲 I hope you have plenty of support I also found SANDS a great source of support. Talking to others who've had similar losses is very comforting. I find people can be clueless over grief- my mother in law literally said now you are having another baby you can put it behind you what happened last year. 🤦‍♀️ I hope you can find peace and happiness in time, I know it is something you can never get over Xx

Anon1029 profile image
Anon1029 in reply to Jess1981

Thanks for your comment and I’m sorry you had to experience this. I am the same…as much as the last two were painful this is just something else. The ectopic carried fear that I would never bear a child due to damage to my tubes. The 2nd pregnancy ended in a missed miscarriage and although the pain of carrying a further 5 weeks after the baby had died was awful, the actual physical side was painless. I had heard from friends and family what to expect and was prepared for the worst but I didn’t suffer like they did. Every pregnancy and loss is different. I was the same as you, looking for signs, concentrating on movements, double checking symptoms and timing when each should start and end. You are just unable to fully enjoy your pregnancy.I have had support books etc from Sands but I just don’t feel it really relates to our circumstance. We are having to terminate our pregnancy due to the multiple conditions he has. He is still alive. I feel sands more relate to babies who have died on their own or after the 24 week mark when they are recognised legally and they are bigger. I feel like we kind of sit somewhere in between. The things they suggest we do we just cannot do due to this size and his deformities. It’s just very sad. We just don’t know what to do xx

We totally understand the clueless side. Some people just don’t get it and because he’s not recognised, he’s almost not recognised to some people we know. People can be hurt fully thoughtless. We have experienced this insensitivity through some of our best friends.

I sincerely wish you all the best with your little one and our thoughts are with you. I really would like you to update me on how you go. Xxxx

Thank you

I'm so so sorry to hear about your loss. Goodness, it must be awful for you right now especially to get to week 21. I'm at week 21 now and it has been a rollercoaster so far. Sending hugs and well wishes through the phone ❤❤

Thank you. I hope everything is going well for you and wishing all the best xx

I’m so, so sorry to hear of your terrible loss Anon1029. I can’t imagine what you and your DH are going through.

You seem incredibly strong and I pray God will continue to provide both of you with the strength to get through this together.

It may not feel like it now but there is a rainbow 🌈 up ahead and although you might lose this little angel Leo 👼, God has another plan for you. 🙏🏽

Wishing you both the best xxx

Anon1029 profile image
Anon1029 in reply to Fifikoko

We are incredibly lucky to have each other and to be the people we are. We have strength in each other and without him I honestly don’t know what I would do. His support is incredible! Unfortunately there is no night in this situation. We are losing baby Leo. He will not survive the pregnancy and I will not survive the pain xx

Thank you

I'm so sorry for you and your partner, I welled up reading your post. 2 years ago this week we had our 20 week scan, which showed baby had a pleural effusion in his chest which was squashing his lungs and heart slightly. We were referred to the Harris Birthright Centre in London for treatment twice, which didn't work. The second time we were there I was 23 weeks pregnant, and we were advised to terminate as they didn't know what would happen and weren't sure if he would even survive birth etc. In the end we decided to go ahead while there was a tiny bit of hope, and we were lucky as everything turned out OK, he is now a healthy 21 month old.I know our situation isn't the same but just wanted to say that I really feel for you. Our world fell apart that weekend, I remember having to get the train back home from London on an extremely busy Friday night (we live in Yorkshire) and I just couldn't speak all the way back and tears constantly fell from my eyes. I kept going over it all in my head, had I done something wrong? Should I have taken things easier etc? I don't think I've ever come to terms with it, despite an eventual good outcome, and I'm debating going to therapy.

The nurses and consultants at our local hospital really helped us, they were so kind and patient with us after hearing that news. I really hope you get the support that you need over the coming weeks and months.

Stay strong xx

Anon1029 profile image
Anon1029 in reply to gillyl

Sorry to hear you were in this situation. I would t wish this on my worst enemy. The feelings of guild sadness and anger are just to name a feel of the emotions. I’m so pleased to hear things worked out for you and your little boy. I can imagine how it felt to hear that news.World falling apart is exactly as it felt. I literally felt like I could cry until I died. I felt like I would disintegrate into nothing. It was my husband that held me up as much as he was collapsing. We too deliberated getting the train back but I couldn’t face it. We got an Uber and I cried nearly the whole way back. It was over an hour drive.

We have also had these thoughts of what if but with everything he has there is just no hope for him. I can’t go through the pain of carrying him and feeling him to wait for the day his heart stops inside me. The rate of survival for boys with Edwards is really very poor and unfortunately he has many extremes. We have battled and battled and agreed we cannot continue. It’s just heartbreaking. I just wish we could be given a break. We’ve been dealt some real shit cards through our time together and just seem to get a break xx

Anon1029 my heart breaks for your husband, Leo and you. I like many others could not pass without saying that you all are in my thoughts and sending so much love and hugs to you all 🌈

Anon1029 profile image
Anon1029 in reply to Channie1983

Thank you so much xxx

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