Stories about: omphalocele

Our patients’ stories: fixing Brody’s omphalocele

By Maureen Simoncini

Brody

When I was 18 weeks pregnant my husband, Kenny, and I went in for a routine ultrasound. We were excited to find out if I was carrying a boy or a girl, but we found out much more than that. The ultrasound revealed that I was having a boy, but he would be born with a serious medical condition called an omphalocele. (It’s a birth defect where the baby’s intestine or other organs stick out of the belly button. In many cases only a thin layer of tissue covers the intestines.)

Once it was established that our baby had an omphalocele, we were transferred to a doctor at our local hospital who specialized in high-risk pregnancies. It soon became clear that our case was severe—on more than one occasion we were told that our baby’s chances of survival were minimal at best.

But no matter how grim the news, Kenny and I said we were going to have the baby no matter what, termination simply wasn’t an option. It was then that I began looking for a second opinion, which led us to Boston Children’s Hospital.  

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One mother's story: Pentalogy of Cantrell

aidan_doyle_4

This story was written by Sarah Doyle, mother of Aidan.

I’m sure that I’m one of many parents who credit Children’s Hospital Boston with having saved their child’s life. But I don’t think many parents have had an experience quite like ours. Aidan was born in April of 2007, with a giant omphalocele, a defect in which the abdominal organs develop within the umbilical cord, outside of the abdomen. This only occurs in an estimated 1 in 2,500 pregnancies. The defect was detected during a routine ultrasound at 20 weeks gestation. It’s pretty hard news to take when you are told your unborn child has a life threatening defect, and that the defect may be associated to chromosomal abnormalities or that other anomalies may be present. We thought ourselves lucky; the omphalocele appeared to be isolated, and his chances of survival seemed pretty good.

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