[CoryEllen]

I have been contacted by a pbmom about adopting her baby boy due in June, diagnosed with Gastroschisis. I was wondering if anyone knew about this condition, and can tell me about the number (& ballpark cost?) of surgeries, length of hospital stays, long term effects, etc.

I have searched a few websites that explain what it is, but I haven't seen any info on 5-10 years down the road. I want to be informed before I meet this pbmom.

Thanks for the help!

[athikers]

I don't know any specifics about the prognosis... but I know it is one of MANY dx that cause reflux &" feeding issues, problems I am intimately familiar with!

As other mom's have told me and I have told many people, feeding issues are maddening. Of all my fson's medical issues, it is the feeding issues that make me cry, make me lose sleep at night and make me wonder if Teeter will ever be able to function independently as an adult. It would seem that children should naturally WANT to eat enough to survive. When they do not, and you try everything you are supposed to do and they still do not, it is very frustrating and challenging.

All this said, your best "weapon" will be to find a good ped or ped gi that knows about this dx specifically and can answer your questions directly, so you can learn how to best help this child. It will be very challenging, but it will be worth it.

[CoryEllen]

Thanks. I am waiting to hear from my ped, but who knows when I'll get called back!

[EZ2Luv]

The prognosis is actually pretty good longterm. It is corrected immediately after birth and it can take anywhere from 10 to 21 days for the intestines to go back where they belong. Alot depends on how much of the intestine needs to be put back too. A majority of the time this is the only defect present, in other word it unsually doesn't have other defects that come with it(down, usually brings heart problems, ect)
The good thing about this defect is that it can be diagnosed before birth so preparations for treatment can be present at the birth. Most of the time the first few months of life require the most medical treament and cause for concern as the intestine begins working as it should then it is more or less monitoring growth to be suere that nutrients are being absorbed.
I have known of a case where the kid is doing good, going to kindergarten, you would never think he had this.

As far as costs, I would think it would be covered by insurance. A few years ago I saw it on one of those baby story type shows and that baby went home and was doing well too.
Ultimately you are the only one that can decide what is best for your family and how much you as a parent are able to endure. Just know that there is nothing wrong with passing up a placement.

EZ

[CoryEllen]

I have a friend who is a pediatric nurse at the local hospital, so I asked if she had any experience with
gastroschisis patients, and she said that worst case scenario there may be a colostomy bag for life (sp?), special dietary needs for life. My pediatrician called me back and said that there is a 10% mortality rate for the surgery, and an average stay of 1 month in the hospital. My insurance will cover 90%, but I am thinking it will still be pricey. There is a pediatric surgeon who will meet with me at the hospital if I want to know more.

I understand I can pass on this placement and I won't feel guilty for doing it if it doesn't feel right. I want to know as much as I can so I am not surprised.

Thanks for the advice, and keep it coming!

[Mystik]

My little cousin was born with this condition. No one really knows the cause of it, but it happened. She had 2 surgeries immediately after birth to tuck the intestines back in, she had to stay in the hospital for the first 2 months of her life, but then she got to go home. She is 4.5 years old now and in her first 2 years of life had some intestinal blockages that hospitalized her and took some more surgeries to correct, during this they also fixed her belly button to make it look normal. She hasn't had issues for over 2 years now, but everyone always has to observe her for any symptoms that may signal another blockage (major lack of appetite, hard stools, belly aches, etc.). She did have a lot of problems learning to potty train for bowel movements, but other then that she's a perfectly normal, happy, healthy child.

[CoryEllen]

I just thought I'd let you know that we are not going to be able to adopt the boy with gastroschisis. The birthmother disappeared, and no one knows where she is. I hope she is safe and that she finds some help and happiness soon.

I appreciate the responses I got, and I always love knowledge so it was still worth my time to investigate this condition.

Again we wait for the match that will someday be our daughter or son.....
Thanks everyone!