Baby boy born with a large Omphalocele

Michele - posted on 10/06/2010 ( 2 moms have responded )

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Hello everyone. I guess you can see that I am new here. I am married and have 3 little girls and now a beautiful baby boy.
My son was born on Sept.9th 2010. He has a large Omphalocele. Everything was going fine, he was starting to be feed 1cc of breast milk. And going strong, he would even give the nurses a hard time. He had a thing for his tube that was in his mouth. When he wanted attention he would pull on it to make it beep. It was funny how he had them nurses hopping because of him pulling on that tube.
When they moved him into a different room but in the same unit, things changed. The doctors tried to wrap the Omphalocele to help push some of his intestines into his tummy, and the pain medication they had him on wasn't working. So they changed it to Morphine. Then he started to swell up. AT first it was his cute little legs and his feet. But now it is all over, you can barely see his cute little nose. So they took the wrap off and said there might be damage to his kidneys because of all the pressure from wrapping it and trying to get his intestines back inside his tummy. Now they have him on proteins trying to help his kidneys. Has a Kidney doctor looking at the Ultra sounds, has him on medication to help with the retaining of water. And yet he is still swelling.
I am so worried over my little baby, and do not feel this is normal for him to go through with this defect. I guess I was hoping with you ladies going through this that maybe ya'll can tell me if this is normal or not.
And maybe someone can tell me some other bumps that can come along in this road we are on.

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Sarah - posted on 10/07/2010

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Hi Michele,

Is your son's full liver involved in the omphalocel? If so, please have them do an ultrasound to make sure that the hepatic veins are not kinked. This is especially more of a concern if the omphalocele (AKA "O") is narrow at the base and taller in height. If the O is wider at the base it is less of a worry, and especially if there is more skin growth up the sides of it.
I have not had the experience you are having myself, but I would recommend checking out the Mothers of Omphaloceles - MOOs Facebook page. Several of our members our on this site, and you can also join our online group at www.omphalocele.net/wordpress/ We literally have hundreds of members there, and someone is bound to have had an experience like this.
Hope that helps!
~Sarah (mommy to Aidan, 3 years old, Pentalogy of Cantrell w/ giant O)

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Michele - posted on 10/08/2010

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Ty, No my sons full liver is not inside it only some of it. They have done ultra sounds but I will ask his doctor in the morning about the heptic veins. I do know his O is actually perfect shape round 4cm wide and 4cm long. They are now doing the "paint and wait" thing. And skin is growing aorund the sides of his O.
I will check the fb page out and the site as well. Ty for answering back...

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