Gastroschisis

Hi there,

My name is Nicole and Im 22 years old. I was born in 1986 with Gastroschisis, the defect was unknown to my parents or there physcians untill I was born. I had kinda a ruff childhood with being sick alot but not alot related to gastric functions untill about the age of 17, about then is when I started having problems with digestion,pain, bloating,constipation, all these really awefull, painfull, and uncomfortable things.  I felt like it would take my gut days and days to process anything properly, and that it was never doing a good job of it.   Soooo I saw a couple of physcians about my concerns and obtained the medical records and operative report from the day I was born as sort of a guide to what really “went down” on the day.  Come to find out that I had a defect with the stomach, pancreas, duodenum, colon, and the small and large bowel, all outside the abdominal cavity.  I gave this information to my physcian and they did some tests like a barium swollow to make sure the malroation of the bowel had been corected properly and there were no other internal concerns. the study showed that everything did indeed work “satifactory” was the word they used, but that it just took forever. They did say they belived there were some fair amount of abdominal adheasions that could be causing all these types of symptoms to come and go, and recomended plastic surgery to revise the scar and to take a look at the adheasions.  So I had that done when I was 18 and I felt a little relief after the surgery but not much. So now I’m 22 and still dont feel just right, I believe Ive done what I can and wonder if there is anyone else out there like me who has experienced these same types of issues with this defect later on in there life.  I feel strange not knowing whats going on inside of me it dosent feel like I think it should, and Im sick of being obbsessed about it !?!? I do watch what I eat and excersize regularly but nothing seems to help, ive seen at least 5 doctors  and they tell me that everything should be fine.. but it dosent feel fine !!

Is there anyone out there like me ??

read comments (3)

Hello all,

My name is Tracy and it is nice to see a supportive site such as this for gastroschisis. I was born on May 20, 1978 with this unfortunate issue. I am now 30 years old and very healthy! I wanted to write to let all of those parents out there know that your child can live a healthy life. I have a beautiful daughter that was born with no problems at all. Chloe is healthy and there was no sign of any issues during pregnancy or at birth.

Because my gastro was so long ago, I have a large 1 inch deep scar that runs from my breast-bone to my pelvis. The scar has always been a sort of medal for me and although babies today will have a belly button and very little scaring…still be supportive. My parents were wonderful at letting me know that I was unique and that was special. I remember as a young girl showing my friends my “cool” difference.

God bless all of the parents going through this now. Your babies are beautiful and it takes special people to deal with an issue like Gastroschisis. However, your babies can live full lives! The only issues I’ve had are blockages a couple of times in my life. I was 14 the first time a blockage snuck upon me and 26 the second.

I hope I haven’t bothered all of you with the fact that I’ve told my life story…but I know how worried I was thinking my child would have this. I can’t imagine how scared the parents of babies with this abnormality are. I’m sure every parent is scared for their future and the here and now. Feel free to ask any questions! I am very open about it.

Have a blessed week!

Tracy

read comments (2)

Hello Everyone, My name is Stepfanie and i’m 19 from Lancaster Pa. We found out in April that i was 18 wks preg. we are now going into week 28 and our baby is due September 20th. The only problem is that my baby was found to have “Gastroschisis.” i find it really hard to deal w/ this because they become/stay small babies. and currently (6/25/2008) the large intestine is swollen due to the amniotic fluid so i have to be checked weekly.

Anyone who has had to deal w/ this i’d like to talk and listen to what you have to say. I also have to go to a different hospital as planned w/ a c-section and depending on how bad the intestine gets, the baby would be a very early c-section and i’m just scared because I don’t know when it is too early for a c-section.      Thanks!

read comments (9)

Hi Everyone. My name is Kelsey and I live in the NY area. I recently had a baby with gastroschisis and am now for the first time looking at the information available to parents on the internet. I am so thankful that I did not spend much time looking at the information available on the internet, as so much of it is scary and would have only worried me more. I thought it was important to share my experience with other parents who are expecting babies with gastroschisis and let them know that your baby will be okay. I first learned that our baby had gastroschisis when I was 12 weeks pregnant. I remember the hearing the words birth defect about my baby and feeling like I could not breathe. It was a very scary time. For the remainder of my pregnancy I was seen on a weekly basis by a high risk doctor at New York Presbyterian Hospital. I was scared, but I also remember how great it was to get to have an ultrasound every week and see our little girl!

Our daughter, Ryan was born naturally at 37 weeks and weighed 6 lbs. The delivery was without any problems and aside from the gastroschisis Ryan was a healthy beautiful baby! She had the first of two surgeries within a few hours of her arrival. After her surgery she was transferred to the NICU where she received excellent care. Yes, it was very hard to see our baby hooked up to so many monitors and with tubes up her nose and down her throat. Those first few days were very hard as we could not hold her and I felt so helpless. As the days went by she continued to improve. 5 days after her birth she had her second surgery to put the rest of her intestines inside and close her tummy. 9 days after she was born all the tubes were removed and we could finally hold her. It was amazing!! Each day she continued to make progress and the dr’s gradually increased the amount of milk she could eat. I remember the first time she tasted milk - the look in her eyes was priceless. Ryan drank a few cc’s and let out this big sigh as if to say now that’s what I have been waiting for! Each day we would celebrate the increase of milk she could drink and how many times she had pooped. I never realized the small things would become so important. Ryan was released from the NICU 24 days after she was born and is doing great. She has had one follow up appt with the surgeon and he sees no reason for her to have any follow up appointments aside from her regular pediatrician visits. She does not have a belly button and has a small round scar about the size of a pea on her tummy. She is now 3 months old and is a normal healthy baby!

I just want to assure all the parents who have learned that your baby has gastroschisis that your baby will be okay. Yes, every situation is different and I am not a dr, but having gone through everything I am confident that your baby is in excellent hands and will receive the best of care and be at home in your arms before you know it!

read comments (1)

My name is antoinette. I am 25 yrs old. I was born on Halloween day( 10-31-82) with gastroschisis. I am extremely happy that I have found this web site. I thought I was the only one born with this birth defect. I have always wanted to meet and talk to someone about this defect.

Living with this has been very tough for me being the one child born out of four kids with this abnormality. I have so many questions about this defect. Unfortunatley I wasn’t blessed with having loving parents there to educate me on gastroschisis.

I still have to live with medical problems because of the large anount of intestines lost at birth. When I was 18 yrs old I was able to become independant and thats when I started to slowly learn about this birth defect. I was hospitalized for the first 6 months of my life. I am very insecure about my body becuase of the gigantic scar across my stomach. I wish I could wear a 2 piece bathing suit and feel attractive.

Sometimes when I am dealing with my life long health problems, I feel that this is such a burden on me. In the end, I know there are blessings in disguise and I believe this is one of them. If it wasn’t for being born with gastroschisis then I know I wouldn’t be as strong as a person that I am today.

read comments (2)

Hi my name is Rosie and i am 29 weeks pregnant my baby girl has got Gastroschisis and i dont know what to do
Hi i am 29 weeks pregnant and i have to deliver my baby girl at st marys hospital in Manchester it ain`t that far away from home as i live in Bolton but i am really scared for my child i want the best to work out for her how did you all feel when you had your baby because i am only 15 years old

Please help, thank you

read comments (1)