24 Weeks Pregnant With Gastroschisis Baby

Hi, my name is Michelle im 23 years old and 24 weeks pregnant with a baby boy who has gastroschisis. I cant even begin to explain how scared i am about everything. i just want to know that he is going to be okay. Im also a type 1 diabetic which is making this pregnancy even more complicated. and the more i read the worse i feel....some of the stories are so inspiring and others scare me to death. if there is anyone that can maybe give me some good news or some hope that would be great :)

thanks,

Michelle

prettynpink1700 prettynpink1700
22-25, F
7 Responses Mar 2, 2010

I have a 16 month old son who was born with gastroschisis, and was told that I would only carry him til I was 33-35 weeks pregnant. I proved the doctors wrong, and carried him 39 weeks and 3 days! :) Although, he was born with low blood flow to his intestines and had to have multiple resections, causing him to have Short Bowel Syndrome (less than 80 cm of small intestines). He had a 5% chance to live, and beat all odds with a smile on his face! When he was severely sick, a blood vessel ruptured in his brain causing his spinal fluid to clog in his head. They diagnosed him with hydrocephalus and put a shunt in. After many problems with the shunt, they let him try to absorb the fluid on his own (because the blood clot went away) and he did it all by himself! There is like a 0.3% chance of hydrocephalus being cured like that, but he did it!! He was in the hospital for the first 6 months of his life, and many admittions since then. He has been off of TPN for 10 weeks now, and we are going to Birmingham friday to get his central line taken out! He has a g-tube, and will probably be on that til he is 4 or 5, but we only run it at night now! He has 4 teeth, and is almost crawling. He is delayed in a lot of aspects, but otherwise a normal, happy, perfect baby! God chooses who to be parents, and chooses who to be parents of babies and children with any birth defect or disease. We are the strongest parents! Put your faith into God...He is the ONLY reason MY son is ALIVE!!

I was born with Gastroschesis. I have a scar that's about 1ft long that goes vertically across my abdomen. I've had a total of 9 surgeries, but am now fine. I also had a bowel instruction caused by scar tissue. I was told I would never be able to eat and had a g-tube until the age of 7, and I'm now just like any average teen. I had very severe gastroschesis so I'm sure your son won't have many or any of these problems, though. Best of luck! :)

I was born with Gastroschesis. I have a scar that's about 1ft long that goes vertically across my abdomen. I've had a total of 9 surgeries, but am now fine. I also had a bowel instruction caused by scar tissue. I was told I would never be able to eat and had a g-tube until the age of 7, and I'm now just like any average teen. I had very severe gastroschesis so I'm sure your son won't have many or any of these problems, though. Best of luck! :)

I no how you feel it's a very scary time but I now have a beautiful 8 week old little girl and she is perfect! Try to stay positive I feel it helps! If you would like to talk let me no I'm in the uk and could send you some pictures xx

Hi there! My name is Jennifer Case Anderson...My youngest little girl was born sept of 2009 with gastroschisis. i know exactly how you feel. I was so scared!!!! She is 13months old now, and doiong outstanding. Youd never even know she had such a rough start! She has a special little belly button, but thats it! I am also involved in the only foundation in the world for Gastroschisis; Avery's Angels. I am the new/expecting Mommy Coordinator for Avery's Angels NPO..... Meghan Hall, the founder...lost her son July of 2009 to complicaions with gastroschisis. She started this organization in honor of her sons life, and funding for research and support. It is a small organiztion, but growing daily. The facebook page now has over 1400 fans. you wouldnt believe how many Mommies we have contacted. were always looking for and needing volunteers too! Please check out the facebookk page, and our website. There are so many moms and survivors...stories and pictures.....We are here for you! We can even get you in contact with a "veteran mommy" in your area, to talk with you about getting prepared....and what to expect..... I wish you the best of luck! Love, Jen<br />
<br />
www.averysangels.org<br />
on facebook as:<br />
Avery's Angels; NPO funding Gastroschisis Research and Support

My son Lucas was diagnosed with Gastroschisis at our 18week ultrasound, We got told the wrong sex as well which is apparently common in Gastro baby's. Its so hard to know what to expect especially when the doctors and ultrasound techs just say we will have to wait to see how bad it is when he's born. I did find out the average gastro stay for bubs in America is 3 weeks however in Australia where i live its 2mnths.<br />
I was induced at 36 weeks at JHH, He weighed 6 pounds 4 or 2992kg's. I didn't get to see him before they whisked him away but i was prepared for that, my partner managed some sneaky photos.<br />
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Lucas' bowel was able to be reduced in ward (put back without an operation). He developed a hernia and had many complications being able to digest sugar and was put onto a carbohydrate free formula known as RCF (i think). I pumped for three months in the hope of breastfeeding. Whilst in NICU our days were spent by his bedside getting excited with every bowel movement and reduced aspirations.<br />
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Lucas continued to throw up all food until the scans showed up an obstruction in the bowel (Kinda a twist). Lucas had a operation to remove that bit of bowel and he started coming good again. The hernia was taken in the operation and a new belly button created which looks great.<br />
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In my opinion all the time in hospital is just waiting for your bubs bowel to start functioning normally before you can go home. This can take some time but its defiantly worth it.<br />
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We spent 4mnths in NICU before we came home and he was on a normal baby formula by then. He has just turned 1 and is going great looks like no complications other than a big belly but they grow into it. He's just like any other normal kid which is amazing because when he was diagnosed the doc told us to abort, so glad we didn't listen. We have to make sure he doesn't eat to much sugar and make sure he doesn't get constipated, yearly we will get his vitaman levels checked but so far so good.<br />
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I respect and sympathize with any one going through Gastroschisis keep strong and in the end you will end up with a head strong, determined (common of gastro baby's) bundle of joy. The odds are with you the success rate is huge.

Hi Michelle,<br />
<br />
My name is Shannon. I'm 24 years old. I was born with gastroschisis. When my mother was pregnant with me she was scared too. But she held on and had hope. I have a 3 inch scar where my belly button should be. I have had no health issues since my birth. In fact, the scar is always a great conversation starter, lol. Keep in mind that health care has come a long way since I was born. I'm sure your baby will be perfect. If you want to talk, you can email me.<br />
shay112585@yahoo.com<br />
<br />
Best of luck!<br />
<br />
Shannon

Hi shannon my name is lucy my baby was born with gastroschisis too and i would like to know how your life was as you grew older

Hi Lucy. I developed in my mother’s womb with 1/3 of my intestines and both my ovaries outside of my body. The surgery to repair my abdomen after my birth went well. I was born at University Hospital in Albuquerque, NM. From what I know, everything was just pushed back in. I was premature and spent 1 month in the hospital. I have a 3 inch scar rather than a belly button. I had no problems with my menstruation. I was very much blessed in not having any problems growing up. I was self conscious about the scar, but I learned to live with it. I did, however, start having problems about the age of 25. I had a tumor and my right ovary removed. The surgery caused the scar tissue from the gastroschisis repair in my abdomen to grow. I have had 3 surgeries since then to remove the adhesions (scar tissue). My small intestines are bound together by adhesions. Basically, my entire abdominal cavity is tied together by adhesions. I have had my gallbladder removed because the adhesions were preventing it from working properly. My liver is stuck to my abdominal wall. I just left the emergency room a few hours ago because of severe abdominal pain. I can't eat solid food, haven't for the past 3 months. In my case, the gastroschisis did not become a problem until I had the surgery to remove the tumor, thus irritating the pre existing adhesions from the gastroschisis repair. I think if I had not had that surgery to remove the tumor at 25 years old, I would not be having the problems I have now. If your child requires additional surgeries I would insist on having the doctor apply an adhesion barrier called Seprafilm. This helps prevent the adhesions from growing. If you have any questions I would be happy to talk to you more. How old is your baby? How did the repair go?
Shannon