Gastroschisis

Hi!! My name is E.. My cousin has a little girl that was born with this 2 years ago. I know it is scary, but the surgeons are good at what they do. Emma was born about a month early and they got her fixed pretty quickly. The surgeon was actually able to get a lot of her organs back in without the surgery. He made a hole the size of a quarter and gentle pushed them in with his finger. Then in the surgery he had to just get part of the intestine back in and sew her up. She is a thriving 2 year old and doing great. If you have any more questions please ask. I could also get you in touch with Cathie to ask her questions if you like. I will be praying for you and your baby.

H., I can tell you this. My Aunt had this happen to her. She did not know in advance and therefore did not have doctors waiting and ready as you certianly will have. Her son Tommy was born and this scary ordeal unfolded. This was 1981. All I remember is even then the unexpected surgery went fine and he healed quickly. He had to be fed by a tube while he healed and he was born small so he gained weight slowly. He grew up with my children though and was an active kid who seemed unfazed by his dramactic start in life.
I am happy to say that today Tommy is a very intelligent, 6 foot tall handsome young man without side affects.
I know it was h*** o* his parents but I believe more so because they did not have the benefit of knowing in advance.
I know God is watching out for your little one and you'll be ready and waiting to make his or her life perfect. I hope this helped. G.

> yes I do It is more common then you think and really easy to take care
> of. don't worry it a pretty easy procedure. My sister in laws baby was
> born the same way.and she is perfectly fine ,don't worry.

I just wanted to respond by saying that I pray for you. Hopefully everything will be okay for you and your child.

H., I can't imagine how hard this must be for you! But please know that things usually work out well for these babies. A good doctor can follow your pregnancy and get the ball rolling to make sure a pediatric team is ready for the surgery. Some perinatologists feel that a vaginal birth is just as reasonable of a choice as a cesarean. I highly recommend finding a hospital that has a "kangaroo care" protocol for its NICU. "Kangaroo care" means that the baby has as much skin-to-skin contact as possible and is feed (even if by tube) with mother's milk and not formula. "Kangaroo'ed" babies are discharged from the hospital significantly earlier than those receiving routine care. My prayers are with you.
~V., mom and midwife

Looking at your profile it appears referring a specific doctor would not help. I am in Utah. I have a friend that's first child (boy) had the same problem. They were able to care for him very well because they knew his condition early on in the pregnancy. She went full term but did deliver C-section. Her son was put in ICCU right after birth and within a day or two had the surgery. He is a health happy boy. The only concern she had after surgery was that he looks different, no belly button and the concern of what teasing he would have to endure someday. She recently had one put on. It is cosmetic but it will eliminate something for kids to tease about.

Hi H.,

I am sorry to read of your discovery. I do not know anyone who has gone through this personally, but I worked in labor and delivery prior to becoming a doula. I do know of a baby who was born with this condition and did well after surgery. While I cannot speak on this topic personally, I did gather some information to help you better inform yourself.

Resources

Digestive Disease National Coalition

507 Capitol Court

Suite 200

Washington, DC 20002

Tel: ###-###-####

Fax: ###-###-####

Email: ____@____.com

Internet: http://www.ddnc.org

NIH/National Digestive Diseases Information Clearinghouse

2 Information Way

Bethesda, MD 20892-3570

Tel: ###-###-####

Fax: ###-###-####

Tel: (800)891-5389

Email: ____@____.com

Internet: http://www.niddk.nih.gov

Birth Defect Research for Children, Inc.

930 Woodcock Rd

Suite 225

Orlando, FL 32803

USA

Tel: ###-###-####

Fax: ###-###-####

Email: ____@____.com

Internet: http://www.birthdefects.org

Best of luck to you H. and your baby!

Dear H.,

We have had a lot of experience with pediatric gastro-interologists in this state (OR). The only specialists like that here are all in Portland at either Legacy or OHSU. Personally prefer Legacy and go to Dr. William F. Marshall M.D. there at ###-###-####. You can contact me personally at ____@____.com to discuss this further. Unsure from your message where you are located so don't know if a referral in this state is appropriate. K.

hi H., i haven't had experience with gastroschisis, however i did support a friend whose baby had to have surgery immediatley after a c-section for another issue. it has been a long road. the baby became deaf due the medications given to her.
i am happy to support you through this!
love, D.

H. I have had a client of mine that had twin girls and only 1 of them had Gastroschisis and was taken to surgery right after delivery and now is a healthy 9 month old little girl. Where do you live? I am in Portland Oregon.

Hi there,

My youngest daughter is now 4 months old and when she was born she had Spina Bifida (a neuro tube defect. an opening in her back) Well after she was born she needing some surgery and she was put in the NICU (Neonatal Intensive Care Unit) While she was in there I became friends with a mom across from where Emily (my daughter) was. This mom was explaining what was wrong with her baby. Her baby had the same thing your talking about except I think hers was a serious/bad case of it. Her baby was hooked up to ventalaters and a bunch of other machines. (I am not trying to scare you or anything). This mom I was talking to was going through a pretty rough time. I would just talk to her and watch over her little one when she was away. She didn't know that the baby had Gastroschisis until she was giving birth.

Well I hope that this helps any. I would love to talk some more if you have any questions. I know how it is to just think of your little baby having to have surgery right after birth and not being able to hold it. It is a prety hard thing to go through.

B.-Brandon, SD