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.

Hi @Georgia1512 amazingly we are still enjoying our time with Amari and she will be 6 months old officially on Wednesday! We feel so incredibly lucky to have this time with her. She seems to be doing well apart from still being a poor eater. We are currently looking into ways to get her to keep her feeds down and put on more weight. I have also joined a FB group for UK families with a child with T18. It is amazing to hear about other families whose children are 1+ years and thriving. The oldest child in that group is 28! What a miracle!

A meetup would still be lovely once things get back to "normal". I think it is still too soon to travel far atm isnt it? Im based in Cambridgeshire so I dont think a day trip to Derbyshire is on the cards yet unfortunately. Hopefully when we can arrange it, Amari will still be with us and you can meet her x

@DontCareBear I am so happy to hear that, she Sounds amazing she really does bless her, it really is lovely to hear stories of T18 babies doing so well isn’t it! And 28!! That’s amazing, there is no “one size fits all” with Edwards syndrome, I truly believe each baby will deal with it, their own way. Yeah it’s definitely something worth discussing when travelling is allowed we could meet halfway as such I would love to meet her I feel like I know so much about her she’s an amazing little girl you are so lucky to have her, and she Sounds like she is too to have a mummy like you