I am the mummy of a 4 year old son born with a giant exomphalos. He was successfully operated on within 24 hours of birth and is a healthy little boy now.
I am hoping to organise a get together of parents, and parents-to-be, of similar children to share experiences, advice and provide support to each other.
If you are interested, or know someone who may be interested, please let me know so that we can include you too. Aiming for a get together around Easter 2013 with location to be decided depending on where we all live. :-)