Support for parents of baby with Edwards syndrome

[Georgia1512]

I decided to write this thread in honour and remembrance of my beautifully brave baby boy, Junior, if anybody finds them self in a similar situation and just wants somewhere to write for support, share stories or just to remember their child, I thought it would be a nice place to do so.
My son was diagnosed with Edwards syndrome when I was 17 weeks pregnant as I had an amniocentesis, he fought harder than i expected and made it through the pregnancy. He was delivered via c-section and was the sweetest little boy I ever laid eyes on. He changed my perception completely about Edwards syndrome, he was tiny yet so strong and alert. He breastfed, he responded to my voice and to his musical toys and he had 5 amazing love filled days with us. His death has effected me more than I actually thought it would but I’m determined to still be a mummy to him and to make sure he’s remembered. I just wanted to dedicate a place where I can talk freely about him and others can too if they are in a similar situation.

This is the most beautiful and heartbreaking update, all in one. Thought about you over the last few weeks and am so pleased you got to have Christmas and new year with your daughter. Praying for you all.

@DontCareBear She sounds absolutely amazing bless her, I’m so happy that you got to spend Christmas and the new year with her. I know what you mean by the blue episodes, Junior had the same when he was trying for a bowel movement too, i found it so scary but the doctors did tell me it was just a bit on constipation.

@DontCareBear I've just seen this thread and caught up with it. So lovely to hear about your baby girl. My niece lost her fight to Edwards at 5 months. She started off feeding with a syringe then needed a feed tube, she was a beautiful baby.
I'm not sure if you have been told about these but the turning blue episodes do sound like an apnea. She used to get them regularly where she would completely stop breathing for what felt like forever and then come back around. They did become more and more regular and had to be rushed to hospital as they were becoming longer and longer but the night she left this world she went very slowly surrounded by family. I wish you all the best with your baby girl. X

Can I just say, you are all legends x

@DontCareBear @Lulu2106 wow 5 months is amazing. I just wanted to add that it was a similar situation with my son. When he did pass, he was i my arms and his breathing just slowed. He wasn’t having any “episodes” he just looked his normal happy self and slowly but peacefully went whilst I was holding him. For me, I thought after reading about the health complications etc that babies with Edwards syndrome have, I expected juniors passing to be traumatic and him be in pain and it was the opposite. He was completely peaceful just looking at me the entire time. I’m not sure if this will help you or not I just thought it may be worth a mention.

Thanks @Georgia1512 @Lulu2106 @Lofari and @MeanMrMustardSeed. This information is so helpful. The hospice nurses have all said she is looking fine so not to worry about anything imminent happening but I do worry when she has the blue episodes, even though she doesnt have them often atm. I so hope when the time comes it is also peaceful for her - she is so sweet and lovely, it would be very hard to watch her suffer. Although I will be there for her whatever happens. I realised I never told you guys her name either. It is Amari and it means eternally loved and strength x

I also wondered - do you guys have any photos of your babies in your house? I will definitely have one or some in our bedroom but I can't tell if it would be too painful (or awkward for guests) to have any pictures of her downstairs? If you do have pictures, does it make you sad to look at them or does it bring you comfort?

Thanks girls - I really appreciate this forum and group so much x

@DontCareBear aww I love her name and the meaning is perfect, so beautiful. I have lots of photos of Junior around the house. I have a big canvas of him in my front room and another with my daughter on. I bought this ottoman storage type box too which I use as his memory box, that has his clothes, letters, things I move from his grave etc and thats also in my front room with his teddy bear sat on the top. I think everybody’s different but I love seeing him in my house and I think it helps my daughter talk more about him too, she’s only 4 but I love when she talks about Junior she even talks to his photos sometimes.

@Georgia152 that is so lovely. I feel as though I would be like that - I would love a big canvas of Amari somewhere but my husband feels the opposite. So I am trying to compromise by maybe getting one just for pur bedroom x

@DontCareBear my partner said the same at first but then he changed his mind after junior had passed but even so, like you said I'm sure one in your bedroom wouldn't be an issue, everybody's different aren't they I suppose and me and my partner grieve differently still, I like to go to juniors grave but he hates it, yet after junior had passed I never went to see him again whereas my partner would go to him. There is no right or wrong you just have to find what makes you both happy.

My sister and her husband have pictures all over the house. Her bedroom has remained as it was filled with her clothes and furniture. Myself and other family members all have pictures of her in our homes. My sister doesn't want her to be forgotten or not spoken about so she is very much 'there' in everyone's lives. Everyone grieves differently so you do whatever works for you and your partner. You are very strong, I saw what my sister went through and I cannot imagine how you are feeling. You are in my thoughts. X

@DontCareBear Sending my love. I’m so glad you’ve been able to make some precious memories with your baby girl. She sounds like a fighter. Xxx

Thanks @Lulu2106 - yes that's how I feel. I want to remember Amari forever. She is my first baby and is so loved. I hope we are lucky enough to have more children so I can tell them all about their older sister. Do you mind me asking how long ago your sister went through this and how she is doing now? I know life will never be the same again once our baby is gone. There will always be a piece missing - I miss her now even though she hasnt left us yet. I am praying my husband and I can get through the hard times to come.

@Georgia1512 yes that is true. My husband and I are very different people. I hope he will change his mind later but if not, I will still have pictures of her that I can return to. I believe everything happens for a reason and I hope one day this tough journey we are all on or have been on will make sense.

@SarahD19 thanks - she is an absolute fighter and has been in charge since Day 1. I will never forget watching her on the ultrasound screen trying to knock away the large needle invading her space with her little clenched fists when we had the amnio. It was the cutest thing I have ever seen and I just loved her so much even then. She already had a personality how blessed we are to have her in our lives, even for a short while. I hope you also get to experience the same blessing x

@DontCareBear my niece passed away 2.5 years ago but my sister still goes to the cemetery at least twice a week and like I said has photos everywhere and she is constantly spoken about. I think this is my sister's way of grieving she couldn't just 'hide' all memories of her and photos etc. They even started a charity in her name and that seems to be my sister's main project at the moment.

Hi @Lulu2106 @Georgia1512 @Oysterbabe @SarahD19 @MeanMrMustardSeed - I just wanted to send a quick update as I havent messaged for a bit. I hope you are all doing ok?

We continue to be blessed with our daughter. She had her 2 month birthday on Monday! She has grown to 6lbs after being tube fed for the past 6 weeks and she can even drink about 20ml by NUK bottle, which is just amazing. She hasnt had any further bouts of apnea since the last episode about a month ago. She is generally a peaceful baby and only really cries when she has wind. She is just so amazing. We are so so lucky to have this time with her and we managed to have a professional newborn shoot and the pics are beautiful. Although it is getting tougher to stay grounded as time goes on - I feel myself getting more and more used to the idea of her just being here with us. It is going to hurt so much when she leaves. I have also decided that I dont want to try for another child until next year. I feel like I need to fully enjoy my time with my daughter while she is here and I dont want to be thinking about anything else during this time. I am also going back to work full time in June all being well. I am trying to get back to normal as much as I can - even started healthy eating again and will start swimming once a week next month. I feel like I really need to do that for me, so that when the time does come for her to leave, I will have something to throw myself into or some kind of familiar comfort to help with the grief.

Sorry for the long post! I just havent updated you guys for a while and I also find this group the best place to talk about all the abstract feelings I have in the background. It is such a weird place to be where you are grateful for the present but grieving for the future yet having no idea when or how everything is going to end or play out.

@DontCareBear wow! That is amazing I really am so happy to hear she is doing well, she is amazing and sounds like such a strong little girl you must all feel so proud. I can’t believe she’s bottle feeding too! That is such an achievement in itself. I know it’s such a hard process to be going through, trying to enjoy every moment but then you can’t shift the fear in the back of your head it is such a struggle but what you feel is best for you is the right thing to do, I absolutely think it’s a good idea to find something to focus on now that you can also focus on if the worst was to happen. Thankyou for updating us, I hope your little girl keeps doing as well as she is, it really does make me feel so proud when I hear stories of babies with T18 surviving and showing that they ARE compatible with life!!! I’ll be thinking of you and your precious girl x

@DontCareBear and @Georgia1512 lovely to hear from you both.

@DontCareBear your little girl sounds amazing! I cannot believe what a superstar she has been. Sounds like you’re also an amazing mummy.

My situation has changed since I was last on here. Initially I was simply told baby had mosaicism and there were no guarantees how she would be.

Since then has more scans and tests and my Fetal Medicine Consultant says she presents as completely normal in scans to the point she may be born completely healthy! I’m 7 months now and it has been explained that positive for Trisomy 18 at CVS and low level mosaicism from amniocentesis doesn’t necessarily equate to a diagnosis.

I don’t know whether to accept this positive news as tbh we got used to fearing the worst. We felt very pressured to terminate and told only a couple of months ago her chances of survival were maybe 1%.

As @Georgia1512 said I’m not convinced that the term “incompatible with life” at the first detection of Trisomy 18 is helpful. I finally have confidence in my little girl ❤️

Thanks @Georgia1512 and @SarahD19, we are so lucky to have this time with her and I totally agree that these babies are not "incompatible with life". Everyone that meets her said if we didnt tell them she has Edwards they would never know. She is literally just as happy/peaceful as a healthy baby apart from the fact that she gets too tired to take a whole feed by bottle. Of course I also know T18 babies come with a spectrum of health issues and we have been extremely lucky but so long as they dont have anything too serious that would cause them pain while alive then they 100% deserve to live and experience all the life they can for however long they are with us. I feel how peaceful and happy she is when being held by those that love her x

@SarahD19 I am so pleased to hear that - praying that you have a healthy baby girl at the end of your pregnancy! I can imagine it is still such a tough time going through your pregnancy with the small uncertainty but I truly hope all goes well for you x

Hi @Georgia1512 @Oysterbabe @SarahD19 @MeanMrMustardSeed and @Lulu2106 how is everyone doing during lockdown? I hope you are all managing to stay safe x

Amari is still doing well and it is her 4 month birthday today! I just can't believe how fortunate we are to still have the chance to enjoy and celebrate with her. She is suffering from silent reflux though and there is no ranitidine available in the UK at the moment so we are using Omeprazole, which isnt as good and is very awkward to administer via feeding tube. Hoping it will improve her symptoms soon though, as I hate to see her in pain She was also suffering from really bad constipation but has since been moved off of SMA formula to Neocate and has a Movicol laxative sachet once per day. She is now going regularly but she absolutely hates the Neocate. We were doing so well with the SMA trying to get her to take more by bottle. She would drink 40ml herself of the odd occasion! Now she can only manage 15ml on a good day but I dont blame her as the Neocate smells and tastes awful.

She now weighs a whole 7lbs 9oz, which is just amazing although she still looks like a newborn but with the face of an older baby haha!

I wonder to those that have been fortunate enough to see other Edwards babies get to this stage - did you notice if constipation and reflux was a thing for those babies too? Also she has a snuffly nose that she got from a cold but wont seem to go away even though she doesnt appear to have the cold anymore. She has been snuffly for about a month now. Does anyone have any ideas as to why this could be?

Thanks all and I hope you are all doing well too xxx

Thank you so much for your wonderful update. What an amazing girl Amari is - happy 4 month birthday! I love your posts - they are drenched in your love for your gorgeous daughter.

Sorry to hear about the practical issues - I really hope the supply issues get sorted very soon. I have no experience re your questions, and hope someone will be along soon. The wealth of experience on here is incredible.

We’re all well. Lock down is tricky but manageable and we’re fortunate enough to have a garden and enough space.

Hope you’re all having a good day. You really are amazing!

Wow, what strong women you are. It’s been a privilege to read about your brave children.

Wishing a very happy 4 month birthday to Amazing Amari

@DontCareBear Happy 4 month birthday Amari! What an amazing and strong little girl she is! I’m so happy to get this update and hear how well she’s doing bless her! I hope someone can give you a bit more advice or support with the reflux and constipation. I know there’s people in worse situations but if I’m being honest I’m struggling with the lockdown in the sense of the cemetery being shut. This is the longest I’ve been without going down to Junior, it’s comforting to me to go there to feel close to him and just make his little place look special and it’s hard not being able to go down there.

Thanks @MeanMrMustardSeed and @WhatWouldPennyDo we do just try and give our little girl as much love as possible as well as revel in every extra day we get with her. Glad to hear you have a nice garden to enjoy the sun when it is out!

@Georgia1512 I am so sorry to hear that about not being able to visit Junior's grave. That must be so hard. Hopefully this lockdown will end soon so you can get back to those much needed visits. I totally understand the comfort you would get from visiting and keeping his area special for him x

Happy belated 4month birthday to Amari! Glad to hear she is doing well. I asked my sister about the reflux and constipation and she suggested a reflux pillow so that Amari is at angle while laying down. I have also sent you a pm, my sister would be happy to help with any questions or if you would just like to talk, however she is not on Mumsnet. Hope this helps a little. Sounds like you are doing a fantastic job! X

Thanks @Lulu2106 - I have replied to your private message with my contact details. It would be lovely to hear from your sister about her experience.

Also, I was just wondering where everyone is based? I wondered if after lockdown it might be a nice idea to meet up and talk about our special children and relive memories if that would be something you guys would be interested in? I am based in Cambridgeshire with easy links to London and the North West (I have family there). Obviously it is just an idea and wont take any offence at all if it isnt for anybody - I know we all grieve/remember/approach things in different ways.

I was thinking about contacting SOFT to try and make contact with families that have also had children with Edwards or Patau Syndrome but havent done so yet. Has anybody on here managed to do so and if you did, did you find it helpful or comforting?

Thanks all - this group is truly wonderful and helps me not to feel alone in this situation. I hope I too give you and others the same kind of comfort x

@DontCareBear hey hope you're okk I just wanted to message to see how Amari is doing aswell as yourself, I've just seen your post about a meet up after lockdown, I live in Derbyshire - East Midlands Id be up for having a meet up I think it's a lovely idea