I was born in 1975 with gastrochisis. I have been trying to get pregnant for years. When I was 29 I got pregnant and it only lasted 8 weeks. I am starting to lose hope.
Is there anyone out there who got pregnant and carried to full term? Was it a good pregnancy? I have a lot of questions.
I would like to here your stories. You may email me at eliasjen@yahoo.com
Thanks Jennifer
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Hailey is now almost 11 weeks old. We just wanted to take the time to thank everyone who contributes to this website. When we first heard that Hailey had gastroschisis I was a mess. Everyone seemed to know someone who had gone through it but no one had gone through it themselves. Finding this site helped me to not feel alone. To hear real people share their experience brought comfort and hope. If you are struggling please take the time to read as many post as you can. Hailey is now %100 better. She was only in the hospital 3 weeks after only having one surgery. The surgeon also made her a belly button. So now we tell everyone she has a custom or designer belly. I know how it feels to hear there is something wrong with your baby, but i also know how it feels to have hope and to finally get relief. Please know that you are all in my prayers. There is hope. Happy Holidays.
Brand new support for parents with Gastroschisis babies in Australia!
This is what it is all about, support, a reach out from parents who have experienced the gastroschisis condition first hand and are willing to help others. There is no reason why any of our hundreds of members here can`t occasionally stop by the Gastroschisis Support Group, Australia and help out with a few answers there as well.
Like me April has been inspired to help, so stop by and add your stories to her website too.
Dean
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
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I wanted to ask those parents who have already taken their babies home if any of you guys have had a situation in which the baby kept putting out to much output.. because my baby keeps putting out the fluids and she has 16 days operated already and i just dont know how long it wil take till they can feed her..
any feed back thanks
Hi thanks everyone for lovely and informatic comments . This has helped me a lot i really do appreciate it , im glad everyone’s babys condition has ended in a happy ending .
Thanks again
sophie x
I was born with Gastroschisis sixteen years ago on the 3rd of October. In a way it had and still is maken my life hard. My operation left me with a scar right down my stomach leaving me with no belly button im very self consious and have been bullied about it most my life. It doesnt stop me having lots of friends or doing things most teenagers do but if someone makes fun of it or that it really does bring me down, and takes me a while to pick myself up again. Other than that my operation was successfull after a month in hospital my mum got to take me home, she encourages me not to hide it and be ashamed but to love who I am and everything about myself. Id love to here from someone that also had gastroschisis i never have spoke to anyone before xxx
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My son bobby is four years old. I found out bobby had Gastroschsis at our 1st scan, the doctor was reassuring and told us that it wasn’t a problem, that he would be able to have surgery to pop hid bowel back in, and that would be all. My pregnancy continued well until at 33wks I went into labour, due to how early it was I was given drugs to stop the birth & remained in Chelsea Hospital being monitored daily, 5days later I noticed I hadn’t feel bobby moving in a few hours & when I was put on the heart monitor his heart rate was dropping so I had an emergency c-section.
An hour later bobby had his 1st surgery it went well and he returned to intensive care. Bobby had jaudince and relied on TPN as his only means of fluids. He remained this way for at least 6wks, he couldn’t accept breast milk etc.
Bobby started to show complications and was taken into surgery again, his bowel had created adhesions where the bowel becomes matted together and they had to cut this away, part of his bowel had also died, so they cut out 8cm of bowel, they did not reconnect the two parts together straight away instead the created two stomas, inwhich for another 6wks bobby had a colostomy bag attached to his stomas, he was gradually built back up on fluids and still could not tolerate milk, nor did he have the ability to swallow fluids. After 6wks, he was taken back in for his 3rd surgery to reconnect his bowels. Bobbys liver was under alot of strain and he was very yellow in colour.
In total bobby stayed in hospital for 6months, he came home with a nasual gastric tube and was feed partly digested milk threw this. For another 6 months he remained having to solely rely on his tube for food, I managed to progress his swallowing so he was able to start holding down liquid and solid foods.
Eventually after a year bobby no longer required his feeding tube. He was given extra medicines to provide him with more fat in his diet as bobby found it hard to put on weight.
Four years on and bobby still required medicines and regular check up’s. At face value he is a beautiful, clever happy little boy. But inside he has problems with his bowel, which affect his digestion, the regularity of passing stools and requires added vitamins & nutrients as he is unable to absorb enough from his food.
My hope for the future is that bobbys bowels functions would regulate so he felt like a normal little boy.
Bobby may be a rare case & during bobbys stay in hospital we met many babes with Gastroschsis some went home within weeks others stayed longer than bobby did. All I would say is remain positive, life can throw alot at you but you have to be stay positive for your child. If anyone wants any advice please feel free to email me x x
Pmayes@handpicked.co.uk
hey everybody i just would like to say to all those women with a baby with gastros on the way not to worry everything its going to be great and u baby will be as normal as anyother baby the only thing with this conditions its the first two months when those babies dont accept the feedings and its all about bieng pacient. my baby girl its now four months and we have not seen anyother complication since the second surgery she got for a hernia two months ago. so dont worry and enjoy ur babies if u would like to see pictures of our babe and what we went trough let me know my email is jesusherrera_23@hotmail.com i will love to share our story with u friends thank u and god bless everyone
Hi everyone ,
Just recently found this site for gastroschisis cases so i thought id register as im pregnant and my baby is suffering with this condition. I basically would just like some information on how i can help my baby when hes born because me only being 17 years old and it being my first i have no idea .
. I also would like to know what labour and delivery was like ?? If someone could write back to me i would appreciate it .
Sophie x