I want to spend a little bit of time to talk about the omphalocele. The little extra omph. No matter what else may get eliminated as a possibility, there will still be this to deal with.
An omphalocele is caused by the abdominal wall not coming together, or otherwise called a herniation. It occurs in about 1 in 4000 to 7000 babies. There is no definitive reason why this happens. From the herniation, organs can sneak out and a sac forms around the organs. There are basically two types of omphaloceles – small ones and giant ones. They really could have just called it “large” or maybe “grande” instead of giant. Giant omphaloceles, like the one our baby has, is categorized that way because part or all of the liver has snuck out of the abdominal cavity. We have read some conflicting information regarding omphaloceles and its relation to other complications, but our geneticist suggest that about 70-80% of babies that have giant omphaloceles only have the one complication.
Once the omphalocele has formed, there isn’t any way for it to get better. The only thing that we can do is wait and see. Other than the fact that I have more appointments than usual, this pregnancy will be treated like a normal one. This means we can still take Addison to Disneyworld so she can cry on all the trams. This also means that I have no excuse but to drag her around all the gymnastics apparatuses kicking and screaming. Nuts.
From what we have read online, delivery will be by c-section. Our geneticist says that the sac is quite durable (to quote – like saran wrap) and so babies can be delivered vaginally. That just sounds a bit scary to me.
After baby is born, there will be bit of a stay at Children’s hospital NICU, and then it all really depends on the surgical team and what they want to do. Most likely there will be some sort of waiting period where we paint the omphalocele with stuff that is similar to what they treat burn victims with. This may or may not be done at home. The waiting is used to try to shrink the omphalocele and also give the abdominal cavity chance to grow a bit bigger. There is no saying how long we would have to wait for surgery, or how many surgeries baby will need to have. It depends on too many factors. The good news is that the prognosis after surgery for babies born with omphaloceles is very good. Just a battle scar and maybe some issues with feeding that they probably outgrow.
So this is what we are hoping for right now. Everyone cross their fingers and toes for us please!
For more information, the Philadelphia Children’s hospital has a really good website