My baby was born with 98% no skin!? Can anyone tell me if they have ever heard of this before would be very helpful!

[Jessica567]

Hi, I've only recently signed up for this my son was 10 weeks premature born naturally. However he was born with 98% no skin! We were told he wouldn't survive twice, well he is still here to tell us the story and is now 3 months and two weeks, we were told my medical professionals from three different hospitals that they had never seen a baby like my son before meaning his skin. We were then told it was sepsis and the HSV1 virus that affected him after he had his skin biopsy to rule out epidermis bullosa. We were so thankful that it wasn't eb as the specialist told us if he did have this rare condition he would not have survived past one years of age as he would have had the rarest form?! Thankfully he dosent have this and began to shed what little skin he had and grew a new layer. He now has severe scarring,contractures and will need several skin grafts. I was writing on here to see if anyone else has ever heard of this happening to anyone else as I feel that the diagnosis we got is not completely accurate and it could be something else that happened during my pregnancy to do with medication I was given?
Thankyou Jess 😊

[spaniorita]

Goodness me you and your son have certainly had a tough time, I have absolutely zero experience of this, but I just wanted to say you sound like a fantastic mum and so strong. I hope your son doesn't have pain?

[Jessica567]

Thankyou so much,it's been a long few months but he's getting there! He's not in as much pain anymore bless him. Just need some more awnsers 😩🤦🏻‍♀️

[spaniorita]

Keep going, you're doing great!! Keep pushing for the answers you need. I'm pleased he is more comfortable now.

Hopefully this bumps your post in to active threads and someone with some useful advice sees it.

Good luck to you and your DS xxx