Dubai, United Arab Emirates (CNN)–The day two-year-old Beilin Schwab was taken for surgery to transplant a new liver, she was delirious, her skin orange.
“Her eyes didn’t look like they were attached to her head anymore,” her mother, Kelsey Schwab, told CNN’s chief medical correspondent, Dr. Sanjay Gupta, and were “moving in all directions.”
Apparently, Beilin’s liver suddenly became so damaged that it was no longer able to clear the ammonia from her blood.
Beilin is part of a national investigation by the US Centers for Disease Control and Control (CDC) into cases of sudden acute hepatitis, or swollen liver, that has affected 109 children in 25 states and territories.
On Wednesday, the European Center for Disease Prevention and Control reported that about 340 other children worldwide had similar cases.
In the United States, five children died, while 15 of them required a liver transplant.
Globally, including the US, there have been 11 deaths, while 11 children have had liver transplants in the UK.
Like Beilin, the majority of the children were under the age of five, and many had no obvious health problems before signs of liver injury appeared, such as loss of appetite and yellowing of the eyes and skin, symptoms called jaundice. Some had dark urine and cloudy gray stools.
Within a week, Beilin went from jogging around her family’s farm in South Dakota, to a room in the intensive care unit at M Health Fairview Masonic Hospital for Children in Minneapolis, where doctors were checking her blood four or five times a day to monitor whether she was infected. Her liver is recovering.
Watching Billy’s suffering, Schwab thought, “This is not my child,” and wondered if she would ever get her daughter back.
‘unusual illness’
The liver is responsible for a number of important roles, as it controls clotting factors in the blood, for example, and contributes to the body’s immune response, as it filters ammonia resulting from the breakdown of protein by bacteria in the intestine.
Normal levels of ammonia in the blood range between 25 and 40, according to Dr. Srinath Chinakotla, the surgical director of the liver transplant program at the American Children’s Hospital M Health Fairview Masonic, and Pelin’s level reached 109.
Chinakutla, a world-renowned surgeon, put Pelin on a waiting list for an organ transplant, and the children were automatically given top priority.
In a typical year, a Chinacotla would perform this procedure on 10 children.
Most of them need a liver transplant because they were born with autoimmune diseases or birth defects, and a person may need a new liver due to sudden liver failure.
“This year, we did liver transplants for two children with liver failure. This is very unusual for us,” said Chinakutla.
medical puzzle
More than half of the children in the CDC investigation, including Beilin, tested positive for adenovirus 41, a type of virus that typically causes stomach upset and cold-like symptoms.
The virus has not been linked to liver failure in healthy children before, and doctors are not sure how the disease is linked to it.
It’s not clear whether the virus directly damages the liver, or whether it triggers an unusual immune response that causes the body to attack its own tissues.
A life-saving gift
Beilin was at the top of the transplant list for three days when she received a timely offer of a liver from a 16-year-old from Texas.
Long road to recovery
Bellin is currently receiving treatment to help regain the strength she lost from the disease.
Doctors explained that she is recovering remarkably quickly.
By telling her story, Schwab hopes she will be able to help other families avoid the same fate.
“It’s terrifying, horrific,” Schwab said. “Many families can’t handle the emotional, physical, mental and financial stress this is putting on them.”