Jameson's Story: Giant Omphalocele

Stacy and her partner Stephanie had a difficult time getting pregnant, so they were ecstatic when they found out Stacy was expecting a baby boy. But 12 weeks into the pregnancy, that excitement turned to fear when they found out that their son had a giant omphalocele. Four organs— his stomach, gall bladder, liver and intestines — were all outside his body, covered by a clear, thin membrane.

They immediately started doing their research. They found the experience they were looking for at The Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment.

Find out how Jameson is doing today.

Stacy walked into The Children’s Hospital of Philadelphia when she was 13 weeks pregnant with Jameson. Look at him now.


Jameson’s Omphalocele Story: Look at Him Now

Stacy: Finding out that we were pregnant with Jameson was probably one of the best days of our life.

We went through a long spell of trying to get pregnant. So we were ecstatic when we found out. We found out at 12 weeks that Jameson had an omphalocele.

Stephanie: An omphalocele is when the organs don’t form inside the body, they actually form outside the body. And so in Jameson’s case, he had four major organs outside of his body.

Stacy: We were also told that after genetic testing that there was a chance that he could have multiple genetic disorders. They were talking about maybe termination, which of course, after such a long journey, that was not what we wanted to here. I googled omphalocele because this was all new to us. And the only thing that kept coming up was CHOP.

Our first day at CHOP we went through a lot of testing, we found out that he only had the omphalocele. Other people we spoke with, it didn’t sound promising at all. But when we came here and we said, “omphalocele” I mean it was a known term and it didn’t seem like it was this life ending thing that couldn’t be fixed. Right away I felt confident. And then also knowing that the special delivery unit has delivered babies with omphalocele before, made us feel really confident.

He came out weighing 4 lbs, 15 oz. He was obviously early, 33 weeks and 6 days.

Stephanie: The omphalocele was about 5-6 inches off of his body, containing the organs.

Stacy: We actually, I didn’t hold him for, gosh, probably seven weeks. We spent every single day here for the two and a half months that he was in the NICU. The one night we actually got to lean in and give him a kiss for the first time. And that was probably like the greatest day ever. Actually feeling our skin to his skin, besides holding his hand.

Eventually Jameson will have the final surgery to complete the treatment process. Jameson now is our little bundle of joy. He’s full of energy, he’s so happy, he smiles at everybody. He giggles all the time, he loves to play, he love books. You would have no idea that there’s anything physically wrong with him if you were to see him.

The whole process of being here at CHOP with all the teams, starting from the Special Delivery Unit, moving to the NICU, moving to the Pulmonary Hypoplasia Program, working with our surgeon, it just, it doesn’t get any better than this. We still have a journey ahead, but the outlook looks great.

I walked through the doors of CHOP when I was 13 weeks pregnant with Jameson…

Stephanie: And look at him now.

Topics Covered: Omphalocele

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