‘This is not my kid’: Mysterious hepatitis wreaked havoc in healthy child with
“Her eyes didn’t look like they were attached to her head anymore,” her mom, Kelsea Schwab, told CNN Chief Medical Correspondent Dr. Sanjay Gupta. “They were just rolling all over.
“She would still ask for bananas and ask for juice and ask for snuggles, kind of like she’s still there, but not really,” she said.
Seemingly out of nowhere, Baelyn’s liver had become so damaged that it could no longer clean ammonia out of her blood.
She’s part of a nationwide investigation by the US Centers for Disease Control and Prevention into recent cases of sudden severe hepatitis — or swelling of the liver — in 109 children in 25 states and territories. There are roughly 340 more children with similar cases around the world, the, European Centre for Disease Prevention and Control reported on Wednesday.
In the US, five of the children have died, and 15 have needed liver transplants.
Globally, including the US, there have been 11 deaths, and in the UK, 11 children have received liver transplants.
Like Baelyn, most of the children are young — under the age of 5. Many had no apparent health problems before showing signs of liver injury: They lost their appetites. Their skin and eyes began to turn yellow, symptom called jaundice. Some had dark urine and cloudy gray stool.
Within a week, Baelyn had gone from running around her family’s farm in Aberdeen, South Dakota, playing with her sister and watching the children’s TV show “Blippi,” to a room in the pediatric intensive care unit at M Health Fairview Masonic Children’s Hospital in Minneapolis, where doctors were checking her blood four or five times a day, watching to see if her liver might recover. But it didn’t.
“Slowly watching her deteriorate like that, like her muscles, she would start shaking, and she had a hard time sitting up, and she couldn’t hold her head up, and just watching her go through that was like, ‘this is not my kid,’ ” Schwab said. “Like, am I ever even going to get her back?”
‘This is very unusual for us’
The liver has a number of important roles. It controls clotting factors in the blood. It contributes to the body’s immune response. It also filters out ammonia that is produced when bacteria in the intestines break down protein. When the liver is working as it should, ammonia gets changed into urea and flushed out of the body as urine.
Normal blood levels of ammonia are between 25 and 40, says Dr. Srinath Chinnakotla, surgical director of the liver transplant program at M Health Fairview Masonic Children’s Hospital.
“Anything over 100, you can get symptoms,” Chinnakotla said. “So what happens is that the brain starts swelling, and then they become comatose. And if you don’t transplant them appropriately, they can have brain damage” — or, worse, die.
Baelyn’s ammonia level had gotten as high as 109.
“That’s when I got a little bit nervous,” Chinnakotla said. At levels that high, “the kidneys shut down; the patient becomes comatose. And then you know you are behind the eight ball.”
People waiting for liver transplants can get so sick that they can’t withstand the procedure. That’s the situation Chinnakotla did not want Baelyn to be in.
Chinnakotla, a world-renowned surgeon and one of only a few dozen specialists who perform pediatric liver transplants in the United States, put Baelyn on a transplant waiting list.
Children automatically get highest priority, a status called 1A, reserved for those who have hours or days to live.
In an average year, he might do this surgery on 10 children. Most of them need new livers because they were born with autoimmune diseases or birth defects. Maybe one might need a new liver because of sudden liver failure.
“And this year,” he said, “we’ve already seen two children with liver failure and transplanted two children with liver failure. This is very unusual for us.”
A medical mystery
Disease detectives aren’t sure what’s causing these hepatitis cases.
Dr. Jay Butler, the CDC’s deputy director of infectious diseases, said at a briefing last week that the agency was “casting a wide net” to look at all possible exposures and associations.
Even before this outbreak, sudden liver failure cases like this often puzzled doctors.
“I’ve taken care of a half-dozen or a dozen kids where we did our best look, and we never found a cause for why their livers just failed,” said Dr. Beth Thielen, a pediatric infectious disease specialist at the University of Minnesota who has been treating Baelyn. “And some of them got better, or some of them went to transplant, so this happens at some base frequency.
“And I think what has drawn people’s attention is that this seems to be happening more frequently, and there does seem to be this association with adenovirus — not every child, but there does seem to be a larger percentage of these cases that do seem to be associated with adenovirus,” Thielen said.
More than half the children in the CDC’s investigation — including Baelyn — have tested positive for adenovirus 41, a type of virus that…
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