Newborn’s mystery illness worsens while tests come back negative

Jonah Lee, now 11 months old, was flown to Children’s National Medical Center shortly after his birth to Nick and Abbey Lee.
John Kelly | The Washington Post
Jonah Lee, now 11 months old, was flown to Children’s National Medical Center shortly after his birth to Nick and Abbey Lee.
Posted Nov. 13, 2012, at 9:45 a.m.

WASHINGTON — Every morning during their rounds at Children’s National Medical Center last November, doctors would assemble and try to figure out what was wrong with a newborn known as “Baby Boy Lee.”

He had been whisked away so quickly by helicopter from the hospital where he’d been born that his birth certificate hadn’t had time to go through. His parents called him Jonah.

“They were doing the most obvious tests first,” mom Abbey Lee recalled recently. She and her husband, Nick, were sitting in their Hagerstown, Md., living room. “Days went by, and things kept coming back negative,” she said. “It was great that things were coming back negative, but it wasn’t leaving us with answers.”

Abbey had a trouble-free pregnancy and delivery, but Jonah kept on bleeding after his circumcision. Something was causing a problem with his clotting. His skin tone was a distressing yellow, his blood sugar half what it should have been. And Jonah was lethargic, his heart beating rapidly.

Experts versed in genetics, cardiology, neurology and gastroenterology took turns pondering his case. Then Parvathi Mohan, head of hepatology, visited Jonah in the Children’s Hospital neonatal intensive care unit.

Hepatology is the study of the liver, an organ that has many functions. It processes nutrition from the intestines. It regulates cholesterol. It purifies the body from toxins. It makes proteins for clotting.

There was something about Jonah’s assortment of symptoms that made Mohan remember a talk she had attended a few years earlier by Chicago pediatric liver specialist Peter Whitington.

“I called him,” Mohan told me in a phone interview. “I said: ‘I don’t know if this is a far shot, but this baby’s getting worse. Nothing we’re doing is coming back as positive. Is it possible he could have alloimmune liver disease?’ ”

The human body has the remarkable ability to heal itself. But it also has the remarkable ability to harm itself. For reasons doctors don’t yet fully understand, sometimes during pregnancy, proteins from the baby cross the placenta and go into the mother. The mother’s immune system goes on alert, dispatching antibodies to attack what it sees as invaders. These enter the baby’s blood system, wreaking havoc on the liver. That’s what was going on inside Jonah.

Only a biopsy — using a needle to take a tiny piece of liver — would tell them for sure. But Jonah was too sick for that. Mohan immediately started him on intravenous immunoglobulin, a therapy known as IVIG. A few days later, she gave him another dose of these antibodies, hoping they would flush out the invaders.

And a few days after that . . .

There was a cry from upstairs, and Nick got up to fetch a no-longer-napping Jonah from his bedroom. He’s a towheaded, almost-1-year-old now, and he squirmed to be put down so he could crawl around on the floor and occasionally raise himself to his feet to take some tentative steps. He’s all better, showing no ill effects from 24 days in the hospital.

Mohan has been at Children’s Hospital for 24 years. “I would say this was one of the more dramatic turnarounds that I’ve seen,” she said.

Jonah’s parents think his time in the hospital affected him. To help ease his sleep, they brought in a plush sheep that played different white-noise sounds.

“We kept it in his room,” said Abbey. “Every night when we’d leave to go to the Ronald McDonald House, we put the whale sound on. It sounds most like the womb. To this day, if we put the whale on, he’ll either start crying or look like he’s going to start crying. He associates it with being poked with needles.”

Or maybe any Jonah would be wary of the sound of a whale.

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