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.

[GarkandGookin]

Sending you and your precious Junior love. We found out at 12 weeks (I conceived after treatment having had 5 years of ttc). Our boy stopped fighting at 20 weeks, as he had extra problems as well as Edwards.
He was my only child, and I think about him every day xx

[Georgia1512]

@GarkandGookin Thankyou and thankyou for sharing your story, What a little fighter he was too, it sounds like you’ve had a difficult time I really hope you have lots of happiness and better times ahead of you, I talk to junior everyday, it’s still very raw as it was only in August that I lost him but talking about him makes me feel like he will never be forgotten xx

[GarkandGookin]

You won't forget Junior I am sure. The raw ache does soften but even 9 years down the line I get a twinge at the start of the new school year and times like that. I still can't cope with newborn babies, especially boys.
It will get better, but you will never forget your son xx

[Clayplease]

I am so sorry and touched to read your story. Have you looked up 'physical versus social death'? I found that interesting. A memory book can also be a nice thing to do.

I hope this link works as I love this article.

lauragraceweldon.com/2012/06/12/mother-child-are-linked-at-the-cellular-level/

❤️ to you.

[Georgia1512]

@Clayplease Thankyou No I haven’t, what is It if you don’t mind me asking? Yeah I like the idea of a memory book that sounds nice I will definitely do that and thank you for that link! How amazing is that to know that our babies cells stay with us I’m truly fascinated! X

[girlanonymous]

I just want to give you a big hug.

You're still a mummy to Junior and always will be. I definitely think a memory book would be a lovely way to remember him also.

[Georgia1512]

@girlanonymous Thankyou I really appreciate your message and definitely I’m going to start one x

[DontCareBear]

Hi @Georgia1512 what a lovely thread to start. I think it is great for there to be a place for those that decided to continue the pregnancy when they get such a devastating diagnosis. I am 37 weeks today with my little Trisomy18 baby girl. She is still fighting and I am hoping she keeps going until her due date. We have decided to leave everything up to her and will not opt for a C-Section unless necessary. For us, I feel like it is much easier to leave the choice upto her and I think it will help us move on after she leaves us. But I know throughout this tough journey, parents of these special babies face all kinds of decisions and I appreciate that everyone's decisions and coping mechanisms are different. I am so happy to hear how much Junior responded to your voice and his toys when you both met - so lovely to know Also so amazing that he breastfed! What an amazing little boy he was xxx

[Georgia1512]

@DontCareBear Thankyou I think so too, I Really do love hearing about other little babies with Edwards syndrome, it just makes me feel connected to Junior in a weird way I suppose. I am so so happy to hear how well your little girl is doing, she is amazing already, what a little fighter she is bless her, I did the exact same as you, I left it up to junior to decide how he wanted to make his entrance, although the consultants decided it was best I was induced at 36+3 but he was struggling with my contractions as his heart rate was dropping so ended up having to have an emergency c section. Thankyou so much he really was amazing in every way and just completely changed my world xxx

[DontCareBear]

@Whensitbedtime thank you for sharing your story. So sorry your little girl had to leave so soon but glad you all got some comfort out of meeting her when she did come. It must have been so very hard to say goodbye. My little girl has Edwards too and we also decided to continue with the pregnancy. I have now gone past my due date and will be induced on Monday if nothing happens naturally before then. I am so hoping we get a chance to meet her with her lovely eyes open but we are also prepared for her to be born sleeping. This is one of the toughest journeys anyone could face, it is so unfair for us all to be in this position but I hope we all find some kind of peace in time x thinking of you and your family at this time and sending very best wishes for as peaceful a Christmas as it can be x

[Georgia1512]

@Whensitbedtime Thankyou so much for sharing your story, what a strong little girl she sounds like. It’s such a scary time being pregnant, let alone to be pregnant with a child you know you could lose at any minute it’s definitely hard but I am so glad just as I bet you are that I gave my son that chance of life and let him decide when would be his time to go. There is no “one size fits all” with babies with Edwards syndrome, every baby and story is unique. I’m sure this time of year is really difficult for you, I’m struggling with it myself but feel free to message me any time x

[Georgia1512]

@DontCareBear, I am so happy to hear how well you’re both doing! I’ll be thinking of you on Monday lots of love to you both

[DontCareBear]

Thanks @Georgia1512 - I just had the sweep today (well just the cervix stretch as I am not far enough into first stage of labour to have the membrane sweep). Hoping that speeds things up for a natural labour but it all depends on the little lady really. I am so happy she is still fighting but it is getting a little scary as each passing day I keep thinking it could be the day she has to go. I am still praying she can hang in there. I read there is a 50/50 chance of these babies surviving the labour process, so, that will be the next hurdle if she can make it until then. I hope you are doing ok - it is awful to have to go through this so close to Christmas (I mean for all of us). I also hope you are able to enjoy it as much as possible xxx

[Oysterbabe]

How are doing @DontCareBear ?
You're so incredibly strong. Your little girl is very lucky to have you.

[DontCareBear]

Hi @Georgia1512 and @Oysterbabe - sorry for the delay in replying. I am so fortunate and blessed to be able to say that we had our little princess on Tuesday and she was well enough to come home so we are now enjoying as much time with her as a family as possible. She is unbelievably perfect and managed to make it through the labour process without the need for a c section. She was born weighing 4lbs 15oz but has since dropped to 4lbs 8oz. We are syringe feeding her atm and she doesnt take much before getting tired so the weight drop is expected. We had 3 horrible scares while at the hospital the first 2 days - we thought we were going to lose her and it was just horrible. Luckily she pulled through and hasnt had an episode since being home but we are still prepared that she could leave at any time. We are just taking loads of pictures and videos and trying to make as many memories as possible for as long as we have her. We know we are so blessed just to have this chance to be with her and love her befor she goes. Thank you so much for your thoughts and prayers too - I hope you are doing ok too and treasuring the memories you made too xx

[SarahD19]

Hello everyone. We’ve had a rollercoaster with the diagnostic process. We had a CVS initially suggestive or full Edwards, then what looked like a positive amniocentesis, before being informed of mosaicism via longer term culture. We’ve been torn what to do and know there are no guarantees but have also decided to continue the pregnancy. We’ve heard a mixture of things about mosaicism, that sometimes prognosis is more positive, other times it is not. We’ve had a placental bleed but ultrasounds so far are good (I’m 21 weeks now). It is helpful to hear of other experiences as it can be an incredibly isolating place to be. I hope you don’t mind me also joining your thread. Love to you all xxx

[Georgia1512]

@DontCareBear I am so so so happy to hear that! How amazing does she sound?! What a true little fighter she is bless her, and that’s a good weight too! She sounds amazing I am over the moon that you have had the chance to meet your little girl and have this time to make memories with her. I will be thinking of you and your little one. How wonderful that she’s syringe feeding too that’s so good, I remember being told Junior would need to be fed via NG tube so when we did syringe feeding I felt it was just a huge milestone for him. I hope you, your amazing little girl and your family are well and enjoying having this time together I will definitely be thinking of you and your strong amazing baby girl

[MeanMrMustardSeed]

@DontCareBear that is such amazing news. I hope you all have an amazing time together. Your message really has put all the ‘stuff’ going on around Christmas into perspective.

@SarahD19 all the best to you.

[Georgia1512]

@SarahD19 Thankyou for sharing your experience, I don’t know much about mosaicism, it’s lovely to hear you’ve decided to continue with the pregnancy, it is such a scary time and you’re absolutely right it can be so lonely and isolating which is why I wanted a place for people to just come and openly talk about their babies, their experience, their struggles etc. Sending lots of love to you and hoping your pregnancy goes as smoothly as possible

[SarahD19]

Thank you @MeanMrMustardSeed and @Georgia1512.

I don’t think many people do know a lot about mosaicism - the experts included! I’ve heard stories varying from loss on par with full Edwards, to it being a symptomatic. I think it is basically a huge lottery. But whilst my little girl is clearly putting up a fight and baffling the experts for 9 weeks with diagnostics, we’ve decided we’ll fight for her as much as we can.

@DontCareBear your baby sounds so lucky to have you and I hope you get so many more precious memories with your little princess 💕

[SarahD19]

*asymptomatic (silly autocorrect)

[DontCareBear]

Hi @SarahD19 - sorry you have to go through this journey too. Yes, I have heard the same about mosaicism. A complete lottery and even more rare than full or partial trisomy. I hope your little girl keeps fighting along with you and you end up with a winning lottery ticket under the circumstances 🤞🏼 I truly believe these special babies are only given to certain parents for a reason and you also sound like a strong mama. Good luck for the rest of the journey x

@MeanMrMustardSeed Thank you for your message too. We are truly blessed and are hoping our baby girl makes it to Christmas if possible. We will also get her a little cake for Tuesday to celebrate a whole week of life - hopefully she can keep it going 😊 I hope your Christmas goes well and the "stuff" all gets sorted in time! X

[MeanMrMustardSeed]

@DontCareBear thinking of you this Christmas. Hope your little girl made it to her week celebration.

[DontCareBear]

Hi @Georgia1512 and @MeanMrMustardSeed and @SarahD19 and anyone else following this thread. I just wanted to post a quick update that my baby is still doing well and we managed to enjoy Christmas and New Year together. She gets too tired to feed properly and was losing weight steadily (started off at 4lbs 15ozs at birth and ended up weighing 4lbs 3ozs after 2 weeks) so we have moved onto tube feeding and she is putting on weight again now - 80g in 3 days! She is so sweet and perfect - my husband and I cant stop kissing and loving her. The only thing is that she goes purple/blue when trying to push out a bowel movement. Then we have to wait until she starts to breathe properly again and regain her colour. Im trying to take each day as it comes and just make as many memories as possible with her but it is scary to think one of these days (it really could be any day) she is going to leave us. I do wonder if the blue episodes are a sign of the beginning of the end. This is a very tough journey but I wouldnt change my decision to meet my baby - she is such an amazing little girl and I feel so blessed to be her mummy.

I hope you are all doing as well as you can be and you all had a wonderful Christmas and New Year. Hopefully 2020 will be a good year for us all xxx