On Aug. 1, 2006, JJ emerged. He let out a cry – a huge relief to doctors and parents who weren’t sure whether he would be able to breathe on his own. Amy got a brief glance at her son before doctors whisked him away to neonatal intensive care.
Hours later, she got to see him again. By then, his liver was covered with gauze, wrapped around his tiny body. (“He looked like a pregnant baby,” Amy said.) Amy didn’t see the liver until three days later, when bandages were changed. The purple organ was shiny and large. With cream application, the protective sac toughened and turned opaque.
Nurses and volunteers were too nervous to hold JJ, so Amy and John spent every possible moment with their tiny son. After 25 days, the hospital released JJ with oxygen support.
Amy and John then had to figure out how to dress their infant and put him in a car seat without squashing his liver. His sister Emma, 2 1/2 at the time, quickly learned how to say “omphalocele” and took pride in introducing her baby brother to everyone.
Eventually, skin grew over the organ, turning the protruding liver into a bulge sticking out from JJ’s stomach. Strangers stared, especially when the family went swimming.
JJ developed normally, although he had problems sitting up and lifting his head because of the omphalocele and the holes in his abdominal muscles. Now 3, JJ struggles to gain weight. He is 24 pounds and still wears shorts sized for a 6-month-old infant. Hernias allow his small intestine to sink into his scrotum, enlarging them to the size of a large orange and causing extreme discomfort.
Even with his oversized scrotum, JJ is able to run and play. He successfully potty trained over the summer. The intestines have pressed his testes up into his torso, though, and could cause future fertility problems if not fixed soon.
In May, the family went to Seattle to have the liver put back in his body and to stitch up his abdominal muscles. The surgeon, the same Dr. Hatch who delivered JJ, succeeded at fixing the omphalocele, but not the hernias. The liver sits under JJ’s skin on his stomach.
“It’s not where ours would be,” Amy said.
The medical bills are piling up, and Amy still has to pay for travel, room and board for the Seattle trip. To save money, she and John live in a small two-bedroom house and share a car.
JJ has to stay home a lot to avoid germs, and he gets sick often. The family sometimes goes to play groups with the Twin Falls Mom’s Club. Member Mary Ordway said the kids don’t treat JJ any differently, and she isn’t sure they know about his omphalocele.
“They just go about doing what they’re going to do,” Ordway said. “Nobody pays it much mind unless she needs some help.”
Amy has needed the support lately. Last week, both Emma and JJ had swine flu, and if JJ doesn’t recover in time, the hospital will reschedule the surgery in late spring, after flu season. While waiting for the verdict, Amy is trying to find money for JJ’s medical costs. Help has trickled in from friends and family. Mom’s Club members have stepped up and raised funds, and Snake River Harley Bros have donated money. If the surgery date is moved, Amy will use the gifts next spring, she said.
The financial and emotional stress doesn’t negate the joy Amy gets from her son. He’s playful, he’s funny, he’s curious. In a word, Amy said, he’s perfect.
“It’s just the card we were dealt,” she said. “He’s got something really great in store for him.”