Exomphalos and Gastroschisis parents and parents-to-be

[Newforestpony]

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. :-)

I think a lot more people would see this post under "Children's Health" in the Health section OP.

This section is more for parents with their own disabilities.

Thank you Fabulous, I've also placed it there, however exomphalos and Gastroschisis are also associated with varying ongoing issues, such as heart problems (like my son), trisomy 13 & 18, and multiple midline disorders. Hence posting a thread here too.
I'm hoping to find families through multiple thread locations.

Ah OK. I didn't look. V sensible.

Hi There,

I came across your website whilst suffering google for all things Gastroschisis related.

We are a couple base din the UK who unfortunately fell victims to Gastroschisis, we lost our little boy Luey Jacob in 2011 when he was just 2 days old. What we found is that not a lot is known about the condition over here and little research has been done. After losing our little Luey, we decided to set about a UK based charity in order to fund medical research and get to the bottom of the condition. We are in a fortunate position as my partner Billy, is a professional football player over here and we have received a lot of press. We have turned this into something positive and through the press people have heard our story. In doing so we have raised over £53,000, which we have set up a medical research program for Gastroschisis.

The reason for me getting in touch was to say that we would love to hear stories from your members in their experiences and equally if any UK based families get in touch I am happy to be a connection to provide support over here. WE have a 24 hour telephone service to provide support as well as family support packs for families who have to endure long hospital stays. For those who are less fortunate and need a little extra help with items either for baby or themselves or indeed help financially for travel to the hospital.

If you feel you have UK contacts who would benefit from our services please don't hesitate to pass on our details.

Thank you for your time.

Jade & Billy

hello
I have an eight week old son who was born with an exomphalos major which was successfully operated on at 10 days old. I would be very interested in speaking with other parents who have experienced this. In particular i seem to be struggling with finding out about how babies with this condition fair once they've had the op, for example it really upsets me to see my little man writhing around in pain due to trapped wind and constipation. Will this improve after 3 months like it does for most babies, is it "normal" colic?
Thanks

Hi Hugglebug,

Apologies for the late response. My DD (8) was also born with an exomphalos major.

If you are on Facebook please come and join us at the www.facebook.com/groups/4939128030/ (Exomphalos and Gastroschisis group - there are lots of UK parents on there and the issue you descibed with your son sounds very familiar.

Otherwise you may find Geeps.co.uk useful but the website is fairly inactive at the moment as Facebook seems to be preferred by the majority.

Florence

i had a scan at 13 weeks which cld clearly see the exomphalos , the doctor sat me dwn and told me she was sending me to another hospital to get an amnio, it really scared me as she explained about spina bifida, dwns syndrome, I had to wait 3 weeks to be seen again I got told that everything else looked fine ther was no sign of any other abnormalities but baby is still growing and she discussed Edward syndrome with me and I don't knw why if ther was no sign of it, shes got me really worried now has any one else got told all this

I have a daughter that was born with gastroschisis she is now 18 years old, my daughter had surgery right after birth the doctor removed part of her intestines, after that my daughter was notgrowing due to the part of of intestines that was removed at birth was the majority of the intestines that absolve the food.