Costumed boy
 a super patient
Alter egos help power 6-year-old's recovery after liver transplant

By Helena Oliviero

The Atlanta Journal-Constitution
7:57 p.m. Friday, October 23, 2009

When 6-year-old Jonah Henneberg was asked if he needed anything to make his hospital stay more comfortable, the boy with a swollen tummy who desperately needed a liver transplant didn’t hesitate.

Yes, he exclaimed. A safety pin.

And, all of a sudden, the comfy blue blanket from home was transformed into a cape, and Jonah was no longer a child with a serious illness. He was “Captain Underpants.”

Since getting his transplant in June, Jonah has turned to superhero costumes (13 of them) as a form of super-therapy.

Jonah, who lives in Mableton, now wears costumes every day. His mother said dressing up gives her son an escape from physical challenges and something positive to focus on.

There are a few restrictions: He can’t dress up for school or the synagogue. But, when he goes to the playground or grocery story and every time he visits the doctor’s office or goes to the hospital, he can assume an alter-ego — Buzz Lightyear, Wolverine, Batman, Spider-Man, etc.

“There was a day when I asked him to put his clothes away and he said no,” said his mom, Kerrie Henneberg. “And he never does that. And I was telling him that I do a lot for you, Jonah. I do the laundry, the dishes, cook dinner. And he looked at me. He was on the verge of tears and he said, ‘I am a superhero, and I have to save the world from disaster and that is a hard job, too. ... And it was in that moment, I realized he really believes this.”

A rare disease

When Jonah was born, he seemed perfectly healthy. Within a couple days, he was jaundiced, which is common among newborns. But as the yellow hue lingered for days, even weeks, his parents became increasingly concerned something more serious was going on. He wasn’t gaining weight and was having trouble keeping food down.

Finally, at about 3 months of age, he was diagnosed with biliary atresia, a rare liver disease in which there is a blockage in the ducts carrying bile from the liver to the gallbladder. He underwent a procedure that involves connecting the liver to the small intestine. And for the next several years, with his condition closely monitored, he seemed to thrive.

But earlier this year, his health steadily declined. His spleen became enlarged. His energy declined, and his doctors determined he would need a new liver.

As Jonah waited for his transplant, he grew increasingly interested in superheros. And his mom has seen him get superhero-like strength from the costumes, too.

During a trip to Disney World earlier this year, Jonah decided one morning that he wanted to go on the Buzz Lightyear ride. But his mom noticed he seemed lethargic so she suggested they go back to the hotel room and rest. So Jonah put on his Buzz Lightyear costume and he suddenly felt better.

“It was like the second he put it on, he was never sick,” said his mom.

The first thing he said after the breathing tubes were removed after the surgery was “I want my Iron Man costume.”

Jonah was at Children’s Healthcare of Atlanta for six weeks after his transplant. And so were a handful of costumes and his Spider-Man sheets.

Costumes for coping

Ginger Tuminello, a child life specialist at Children’s Healthcare of Atlanta, said children in the hospital often like to bring something from home, like a favorite stuffed animal or a toy. She said it can be very comforting.

“It can give them a sense of normalcy and a sense that things are going to be OK,” said Tuminello.

Tuminello said dressing up as a superhero can provide an escape for Jonah and also “remind him he’s a kid.”

Dr. Rene Romero, medical director of Children’s Healthcare of Atlanta’s Liver Transplant Program, said pediatric patients often latch on to something — whether it’s a toy or pet — to help them cope with difficult times. He has seen patients in costume before, but never anything like this. He plays along.

“I’ve seen him waiting for me at the door and he’s in a Flash costume and he has his hands on his hips. And I said, how are you feeling Flash? and he said, ‘Great.’”

Once, when Jonah was clad as Humungous, a Dinosaur-like superhero, he even tried to teach Romero how to roar just right.

Romero said Jonah is recovering very well from the liver transplant, and his future looks bright. His energy is at an all-time high. He is being home schooled because it’s the flu season and will probably return to school in March, his mother said.

For now, Jonah takes 21 pills and two blood thinning shots daily.

On a recent afternoon, Jonah jumped on the living room sofa and quickly turned into a superhero fending off alligators.

Clad in a Buzz Lightyear costume, Jonah flung the pillows (alligators) and wriggled across the cream-colored sofa (a treacherous swamp).

Though Halloween is around the corner, Jonah hasn’t decided whether he wants to be a Transformer or an all-black Spider-Man, neither of which (his mom points out with a smile) is a costume he already owns.

But clearly, which ever he chooses will get a lot of wear, long after Oct. 31 is over.
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