Determined parents fight threatening birth defect – At 3 years old, JJ Swearingen is already used to stares.
The Twin Falls toddler has a large scar on his abdomen, which he calls his line. Don’t hurt my line, he’ll say to anyone who handles him. It’s less noticeable than what was there before: a skin-covered bulge that held his liver.
He knows that soon, he and his mother, Amy Swearingen, will travel to Seattle’s Swedish Medical Center for the second time in a year, for another surgery that will keep him in the hospital for days.
Amy is trying to find money for her son’s Seattle surgery to fix massive hernias. It’s the latest medical drama for JJ, who was born with his liver outside of his body – a birth defect called an omphalocele (pronounced “om-FOUL-oh-seal”).
When a fetus develops normally, its organs form outside the torso before entering through the belly button. In babies with an omphalocele, the organs don’t make it all the way in.
In JJ’s case, his liver protruded from where his belly button would have been. Ultrasound technicians in Twin Falls caught the defect when Amy was 10 weeks into her pregnancy. They sent her to doctors in Boise, who didn’t believe the diagnosis until they saw it for themselves.
Through Amy’s second trimester, doctors encouraged her to terminate the pregnancy. Amy and her husband, John, refused, though they knew the risks of having a baby with an omphalocele. As the fetus develops with the liver outside of the body, the lungs stretch out and fill the empty space. The long, skinny lungs often don’t function as well as healthy lungs, and the malformation can sometimes be fatal.
The couple researched omphaloceles and joined an online support group. Several other women in the group were pregnant and due at about the same time as Amy. Some of their babies didn’t survive.
As Amy learned more about omphaloceles, she found a technique called “paint and wait,” in which the protruding organ is painted with a burn cream that toughens its protective sac. When the baby is old enough, he undergoes surgery to put the organ back inside.
Doctors in Boise refused to do the procedure, preferring instead to operate immediately after birth. If Amy and John wanted to “paint and wait,” they would have to go to either Seattle or New Mexico, they said.
“A lot of surgeons don’t do it,” Amy said, although the procedure has been around for more than a decade.
So the Swearingens packed up their belongings and moved to Albuquerque, N.M., where they hooked up with Dr. Edwin Hatch just days before Amy’s scheduled cesarean section.