Step away from Dr Google. You will only see scary pictures which aren’t representative of reality.
You’ll be put under the care of specialist care who will monitor and discuss the potential options with you. Our son was operated on within 24 hours of birth. At the time there was a move to place the exomphalos into a silo, or attempt to place it back in and repair the tummy wall. These days there tends to be a more conservative approach with the covering being treated and cared for with later closure usually before primary school. It depends on size and what your consultant believes will be the best approach for your baby.
You will be told the range of outcomes. Remember this is a range. We fully expected our son to be in hospital for around 3 months and to come home with it still unpaired, so imagine our surprise when he was home fully repaired and ebf after only 13 nights!!
Like all children, each baby born with an exomphalos will have different experiences, childhood illnesses at some point, develop their own personalities and generally be very determined characters who seem to cope with an awful lot, I think simply because they know no different. A couple of people with twins on the Exomphalos and Gastrischisis group (it’s one group) on FB will be able to talk to you about the differences when they are little, however the twin with the exomphalos does seem to catch up quite quickly.
Your baby won’t have a traditional tummy button when repaired, although our son has a sort of manufactured one. Honestly I saw his fellow antenatal group babies with tummy buttons and found the tummy buttons looked very odd as his tummy without one is our normal now. And traditionally they only seem to be dust collectors!!
After repair and going home I think our biggest challenge was weaning. He simply wasn’t ready to eat food at 6 months. We asked to see a child feeding specialist for support at 12 months who was very happy with his overall development. They told us to come back if things hadn’t improved by 15 months - but then he discovered smoked salmon!!! Apparently the smoky flavour appeals to our caveman ancestors instincts! Luckily for our bank balance he’s diversified and quickly moved on to a really balanced diet. He still drinks around 4 pints of milk each day though - no fizzy drinks or squashes, just milk, tea, coffee and water. At 18 he has more discovered the delights of alcohol though!!
I remember how traumatic it was when we discovered our son had an exomphalos. It was far more difficult then to find out info from other parents. Now it’s easy to connect through various online groups. The initial shock will always be a memory but over the years it is overtaken by the other incredible experiences you’ll have bringing up your lovely new family. Your babies, both of them, will be perfect. They will simply be themselves and grow up just like any other child to be incredible, beautiful, funny, kind, some days a little grumpy or sad - but just your own lovely family.