Jameson’s Omphalocele Story: Look at Him Now

Excitement turned to fear when Stacy and her partner Stephanie found out their unborn son had a giant omphalocele. For more: www.chop.edu/fetal20.
Stacy and 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, they learned that he had a giant omphalocele. Four organs- his stomach, gall bladder, liver and intestines - were all outside his body, covered by a clear, thin membrane.
Stacy and Steph had never heard of the condition - a type of abdominal wall defect in which the contents of the abdomen protrude into the base of the umbilical cord, covered by a clear, thin membrane or sac. They immediately started doing their research, looking for experts who knew everything there was to know. They found the experience they were looking for at The Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment, and put their trust in the team to provide the best possible care for their son.
Jameson made a surprise appearance when he arrived early at 33 weeks. For babies with giant omphalocele, a staged surgical repair involving several steps is needed to gradually return the abdominal contents to the belly after the baby is born. There wasn’t enough room to fit all the organs inside his tiny body right away, so the family settled in to the N/IICU while Jameson got stronger. It was seven weeks before Stacy and Steph could hold him.
Jameson and his parents still have a journey ahead - he is in the midst of his “paint and wait” treatment and will undergo surgery to close the omphalocele once all the organs are returned to his abdomen. But he doesn’t seem to mind at all. At 1 year old, he’s a happy baby who won’t let anything stand in his way.

[@vanisloo]

i am a "O" daddy my daughter is 6 she spent 402 days in the nicu.... un repaired in grade 1 and i am hoping for "O" awareness day Jan 31 my B day....we will be in the hospital learning how to wrap her "O" on the long road to recovery......

[@brendaseager7371]

Way to go little buddy. You are tough enough to go through this, than thank god you will be able to go through life and beat whatever hardship or battles may come your way. Stay strong!

[@angieemkey8930]

What a beautiful boy! Thanks for sharing! We just learned about this in nursing school last week!

[@sarah10189]

If anyone sees this who has had a premature baby with a giant omphalocele I was wondering if you can offer some insight. My nephew was born with a Giant omphalocele at 30 weeks. He only weight 3 lbs 10.5 oz. When he was born the doctor said that they couldn't do surgery because he was so small and there was nowhere to put the organs back in- there was no cavity in which to place them to work with. The sac around him omphalocele was treated with mercurichrome to prevent infection (if I remember correctly). His condition never improved and eventually his kidneys failed and we were basically told there was no hope. That they wouldn't try dialysis on an infant his size. And he needed a more intense breathing machine so the decision was made to take him off life support. The autopsy stated that his kidneys shut down and many of the other symptoms were due to mercury poisoning from the mercurichrome that was covering the sac over his omphalocele. In this story the baby was very premature as well but the outcome was different. I still wonder if he could have been saved; the surgeon went on vacation the day after he was born (Brandon was born 2 days before Christmas) and the surgeon returned 2 days before Brandon died. Anyway it was great to see this story with a happy ending. I wish so much I could have my nephew here. He would have turned 20 last December 23rd. Blessings.

[@amylynn204]

What a great video girls! I'm so lucky to know you all!!!!! Go J-Man!!!

[@muzaffarshaikh6520]

Sam my baby omphalocele new 10 many

[@judyelgin3147]

when.my son.was born 46yrs ago with an omphalocele they didn't do routine ultrasounds so his condition was a complete shock for us as well as my OB. he as born but and the sack covering his abd contents ruptured

[@sunshinerainbows1724]

I was born with oome

[@surles23]

CHOP is great!!! Many BWS families use CHOP and many of them have omphaloceles. They are strong and happy babies like Jameson. #howbigbws www.howbigbws.com