Gastroschisis(gas.tros.chi.sis) Support and Resources

After a bad 10 years I feel this will finally be my time to shine. First a little summery of the past 10 years. I got off my central line only to have to go back of after 8 months. Failed my A-Levels, went to college to study social care but had to drop out due to contracting septicemia, Decided to do video games development and passed with tripple distinctions (highest mark you can get). Got turned down for the uni course I wanted (Games art design). Studied Foundation art and heres where my luck started to change.

I contracted Viral meningitis so wasn’t able to complete my course but owing to a string of very fortunate events (mainly posting all my work on the web and getting critique off other artists (something no-one in my class took the initiative to do)) I was able to get myself a pass and I will be attending uni in September after a gap year to get over the meningitis. I have had an article published in PINNTS magazine and am set to appear as a guest reviewer in another magazine

hi im 20 years old, and had gastroschisis when i was born too. ive always hated my scar as it is very noticible and about 3 inches long and quite deep, i had a lot of friends at school and was quite popular, but i never showed anyone my scar only my really close friends, i used to get so scared that people would see my scar that even in summer when it was red hot i would wear a big jumper! i always got my mum to write me a note for PE when at school because i didnt want to get changed in front of other people! Ive always felt ashamed about my scar! I didn’t have a stable boyfriend until I was nearly 18, I became pregnant soon after and was so ashamed of showing my stomach to strangers that I didn’t tell anyone (accept my boyfriend) that I was pregnant untill I was 6 months gone (I didn’t have a bump) I finally told my parents and had tests but because it was so late on into the pregnancy, they missed that I had a urinary infection and gave birth at 31 weeks.Now that I have had a baby ive put on a bit of weight from 8st to about9½/10st my scar had become even more noticeable. Ive been diagnosed with depression and am on antidepressants but these tablets just don’t help!!Does anybody know if I can get corrective surgery on the nhs!

Please help

Thanks

I had my baby girl Kiara on May 31st, 2009. She was just released yesterday and after 26 days of being at San Diego’s Rady’s Children’s hospital it is such a relief. We found out at 20 weeks that she had Gastroschisis and at first we were in shock and our world almost fell apart. I had a c-section date for one week before her due date but she ended up coming out 4 weeks early. When she was born her intestines were dialated 13mm, parts of her small and large were out. She was taken to her first surgery right away and gave her a silo. She had the silo for four days then finally closed her up after slowly pushing them in day by day.  She was highly sedated and put on morphin, adivan, and antibiotics in case of infection. She had TPN fluids and lipids. She started bottle feeding on breastmilk about 2 weeks after the final closure. We had a hard time getting her to start eating and even once she did she had spit up most of it.

After she got up to about 30mls every 3 hours they put her on prilosec for reflux. She was still spitting up a lot but gaining wait. The doctors were worried about her spit ups and wouldn’t let us take her home until she could eat 55mls every 3 hours with minimum to no spit ups. I finally started breastfeeeding 5 days before we got to take her home. This changed everything. She had less spit ups and did really well breastfeeding. She was gaining weight very slowly but they finally let us go home because she was eating enough to gain weight, as little as it was, and having less spit ups. I was definitely frustrated by the last couple of days because everything they were doing for her I could do at home. She is home now and still spitting up at almost every feeding but this is to be expected in gastroschisis babies. Don’t let doctors discourage you when they say your baby is spitting up to much because they will spit up a lot especially with their condition. As long as they are gaining weight and stooling there is no reason they shouldn’t let you go home.

I thought we would be in the hospital forever but the more effort you put into helping them get better the sooner they can come home! It’s frustrating being at the hospital all day long everyday watching your child fight through it all but they are little miracles and even when it seems like forever… they will come home eventually and that’s worth every stress you go through while they are in the hospital.

Best of luck to everyone expecting and those who are still in the hospital with their little one. Trust me… it will get better soon enough .

hi, my names Shelby and i was born jan 28, of 1990 with gastroschisis.

Growing up i never really had physical problems with my scar.  I was a cheerleader and i played competitive fastpitch softball, sliding and all my scar never hurt or tore, When i was  14 and 16 i had re-constructive surgery on my scar so it wasnt attatched to my stomach muscles and because i was uncomfortable with the 6 inch vertical scar in the middle of my stomach and the feeding tube scar i had on the side of  the scar. Thanks god all my friends were very understanding and open minded with me.

well now that im getting older,  I would like to know if having a child is safe. I would love some feedback on others who have had a child.

And to those who are expecting a baby with gastroschisis, dont worry yourself to death. Your baby will be fine =)          I had a very ordinary life! I wasnt made fun of or anything of the sort.  My life has been great.

- Shelby.

I am currently 23 weeks pregnant and was told at 17 weeks that my daughter had gastroschisis and was referred to nottingham hospital, i was wondering if anyone else has got any experiance with this hospital and how they dealt with your pregnancy, also i was wondering if anyone could tell me how long it is before the mother is discharged from hospital and the baby still in there as this is a major worry of mine as i live an hours drive away from the hospital but do not drive myself.

any advice appreciated