Omphalocele, many many tests

[TanteMilly]

Hi



I wrote in a few months ago when I found out I had a bicornuate uterus to see if anyone else had the same thing. I've since found out that our little one has a giant omphalocele (stomach, liver and some intestines growing outside of the body in a sac - not related to my uterus being abnormal). I've been in Toronto at many hospitals for the past week enduring many tests to see if any other abnormalities are present (I'm currently 19 weeks along). This is a roller coaster ride with some doctors suggesting termination and others saying immediate surgery after birth will help the child (if no other defects are present). Has anyone else experienced this? Please let me know...

[cdw]

Hi. I am sorry you have to go through this.  I'm sure your in good care in Toronto.  My understanding the Children's Hosp up there is one of the best in the country.( usa and cannada that is..) I don't know much about Omphalocele except what you already know by now! The intestines (& other organs) protude into the base of the umbilical cord. As you mentioned Dr's are doing other tests to determine other possible anomalies which often occur with omphalocele. I have only, in the long past worked with Gastroschisis.  Which is a birth defect of the intestines outside the body that does not involve the umbilical cord or other organs.  I would ask your Perinatologist for any support group of family's who have carried on the pregnancy and had the surgery's . This might help you finding some answers to many questions and concerns you must have. Again, thinking you and your family. Keep us posted and if you need to talk let us know!

[Kim902]

My daughter had a giant omphalocele and many of her organs were involved. She was born in December 1984 at immediately underwent her first of several surgeries at the Children's Hospital in Philadelphia PA. I found out that she was going to be born with this defect when I was 4 months pregnant with her and like you I had some doctors tell me that I should consider terminating the pregnancy. I am happy to say that I did not listen to them and I decided to go forward with the birth. My daughter is now 21 years old and although it was a very rough road when she was an infant and a toddler, she is a healthy adult now. Back when she was 16 years old, she was so self conscious because she did not have a belly button. We found a plastic surgeon at Children's who was able to do reconstructive surgery and made her a belly button! Please do not hesitate to contact me if you have any questions. (***@****)
Kim

[BearHitch]

When I was about 19 weeks along with DS we endured something like this.  Only, we found out instead of the omphemcele (sp???) he had gastroschesis, the lesser of the 2 evils.  If he had had the other one, I don't think they would've recommended ending his life, just a lot of surgeries - they said that he could have many, many other problems.  In the event that it was extensive, the ped surgeon told us that he may only live 2 years, and because of that some families do opt to "pull the plug" so to speak because of the emotional hardship and financial hardship.  Anyway, he spent 1 month in NICU, and it was a difficult time.  I am sorry you have to go thru this... only you can decide what is best for you and your husband.  I am very much against the termination, but if that had been the card we were dealt, I might feel much differently.  Good luck!