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Support for parents of baby with Edwards syndrome

(8 Posts)
Georgia1512 Wed 09-Oct-19 14:56:39

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 Wed 09-Oct-19 15:05:54

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 Wed 09-Oct-19 16:04:42

@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 Fri 11-Oct-19 21:01:34

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 Tue 15-Oct-19 20:51:34

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.

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

❤️ to you.

Georgia1512 Tue 15-Oct-19 21:44:15

@Clayplease Thankyou flowers 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 Fri 01-Nov-19 12:10:47

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 Sat 02-Nov-19 14:38:47

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

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