'This is not my kid': Mysterious hepatitis wreaked havoc in healthy child with shocking speed - CNN

"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.

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.

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.

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.

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.

"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 ordinarily causes stomach upset and cold-like symptoms.

Baelyn tested positive for adenovirus in her blood but not in her liver tissue.

It's a pattern doctors have noticed in other children, too.

They've sent tissue samples to the CDC for more specialized testing.

The adenovirus infection created a quandary for Baelyn's doctors.

Ordinarily, adenovirus infections are relatively mild-mannered, and the link to liver failure in these children is still uncertain.

But what if it was the culprit?

Patients who get organ transplants must have their immune function turned down with powerful medications so their bodies won't reject the new organ.

"To be back in the hospital setting again, it's like replaying in your head all day."

Schwab shared photos and videos but asked that CNN not film Baelyn, who was taking powerful drugs to weaken her immune system and being weaned off painkillers.

Bhatt says someone can lose a lot of liver tissue and not know until it's almost too late.

When Baelyn came to the hospital, doctors did a liver biopsy to see the damage from the inside.

"Kids that present like that, a lot of times, do turn over within like two to three days and then do fine and not require a liver transplant," Bhatt said.

They took her blood every four hours around the clock, watching for any change in her liver enzymes, her clotting factors, her ammonia levels.

But over the next few days, the numbers did not improve.

They decided to put Baelyn on the transplant list and to screen her parents to see if they might be able to be living donors.

"She kept appearing really well, you know, till she was not well and needed to be intubated," Bhatt said.

So you want to do it slowly and carefully, at least that's my philosophy," Chinnakotla said.

When Chinnakotla explains liver transplants to patients, he tells them it's like hooking up a washing machine: There are two hoses coming in, like one for the cold water and one for hot water, and a hose to drain fluid out.

The hot water hose is the hepatic artery that supplies blood to the liver and pancreas.

Finally, he used blood vessels harvested from the donor to create a special graft, or bridge, between the aorta and the liver.

"When I did that, it looked good," he said.

Even the downsized liver was still too large for tiny Baelyn's body, so Chinnakotla left her incision open, covered with mesh, for a day or two so her care team could check on the transplant more easily and drain the wound.

The operation lasted from 8 in the morning until 4:30 in the afternoon on May 5.

"She came back from surgery, and she wasn't yellow anymore," Schwab said.

We definitely have not slept or ate since the transplant, just anticipating that something bad is going to happen or has happened," Schwab said.

And they're still working through some grief over the fact that their once-healthy rough-and-tumble 2-year-old needed a liver transplant at all.

Schwab hopes that by telling their story, they can help other families avoid the same fate.

"I really want to spread awareness about this because I don't want another parent to be in this situation," she said.

And not very many families can handle the strain that this puts on them and emotionally, physically, mentally, financially."

She wants people to watch for any symptoms -- like any yellowing of the skin or eyes, dark urine, cloudy gray stool, fatigue, fever, nausea, vomiting or a loss of appetite -- and take immediate action if they appear.

"I feel like if somebody would have done a story a couple months ago, I would have definitely jumped on it."

Their doctors, though, say the family did everything right.

"Mom is a fighter, too," Bhatt said.

She's so attentive to all her care."

"Going through your kid almost died and needed a transplant in such a short amount of time, and yet to understand all the medical stuff and ask good questions, it's not something that I personally could have done," Bhatt said.