Matt Beal couldn’t wrap his head around it.
In mid-August, he and his family traveled to Duluth, Minn., for a short summer getaway. He watched his 16-year-old daughter Dara smile and laugh as they took a family boat ride.
Days later, he was at University of Minnesota Masonic Children’s Hospital greeting extended family and friends as they flew in from across the country to say goodbye. Dara was in a medically induced coma. Her liver, kidneys and lungs were failing. She wasn’t expected to survive.
“They told us Dara had something called Wilson’s disease,” Matt said. “I had never even heard of that before. Apparently, there was only one cure for it: A liver transplant. And Dara couldn’t have a transplant. She wasn’t stable enough.”
Wilson’s disease is a rare genetic disorder that prevents the body from removing extra copper, causing it to build up in the liver, brain, eyes and other organs. Without treatment, high copper levels can cause life-threatening organ damage.
“Acute liver failure is very uncommon in children, and Wilson’s disease is even more so,” said Transplant Surgeon Srinath Chinnakotla, MD, the clinical director of pediatric transplantation. “In Dara, it must have been present for a long time before we diagnosed her.”
Friday, Aug. 17, started out ordinarily enough. That evening, Matt and his wife Tonia left Dara in charge of babysitting her two youngersiblings while they attended a golf tournament kick-off event. When they returned home, however, Dara told her parents that she felt ill.
At first, the family thought it was a stomach bug that had been going around their community. Over the weekend, Dara’s condition worsened. “I started getting sick,” Dara said. “It wasn’t that bad at first, but I was in a lot more pain than you would have if you had the flu. I was extremely sick to the point where I was throwing up blood because there was nothing left to throw up.”
On Monday, Aug. 20, the family made the decision to bring Dara into a local urgent care. As Tonia helped Dara into the car, she noticed something odd.
“Her eyes were neon yellow, and her skin was bright yellow,” Tonia said. I mom-panicked and instead of going to the urgent care we went straight to the ER.” Doctors at the local hospital took one look at Dara and told the family she needed to be sent to University of Minnesota Masonic Children’s Hospital for expert care.
Dara was transported via ambulance from Moose Lake, Minn., to Minneapolis. It was there that Dara was diagnosed with Wilson’s disease.
“They basically said buckle up, because it’s going to get crazy,” Matt said. “Sure enough, it was crazy within an hour of them telling us that.”
“Everything happened so fast,” Matt said. “I never knew how sick she was until Dr. [Chinnakotla] told us she might not survive the night.”
With Dara’s body shutting down, a multi-disciplinary team of specialists at University of Minnesota Masonic Children’s Hospital chose to put her in a medically induced coma on Tuesday, Aug. 22. Because of her extremely poor condition, she was placed at the top of the waiting list for a donor organ.
The next day, on Aug. 23, a donor liver became available. That same night, Dara’s health stabilized enough to perform the surgery. Chinnakotla, Dara’s transplant surgeon decided to go forward, but Dara’s precarious condition required the team to take a unique approach.
“The doctors and researchers here are extremely knowledgeable. I turned to them for help and guidance,” Chinnakotla said. “We could take Dara into the OR and put her on complete venovenous bypass. Then we took the old liver out, which was causing her to be so sick, and stabilized her vitals before putting the new liver in. There was no room for error.”
“It was her only hope. Without the transplant her chance of survival was zero. We were told it would be one of the riskiest transplants ever done and it would have to be done in an extremely unique way,” said Matt.
Four hours earlier than expected, the surgery was complete. All steps of the surgical operation were performed at lightning speed and with great precision. After the procedure, Chinnakotla stepped out of the operating room to meet with the family.
“He said it’s done, we did it. It’s in and it is working!” Matt said.
Dara wasn’t out of the woods yet. Because the donor organ came from an adult and was too large for her body, Dara’s team of doctors had to wait several days to close her surgical incision. She also experienced compartment syndrome in her left leg, and needed a fasciotomy to reduce swelling in the limb.
Altogether, she was in the hospital for nine weeks.
On Thanksgiving 2018, Dara and her family returned to meet with Srinath Chinnakotla and thank him.
“Dara had a very, very low chance of survival, but she survived,” Matt said. “We’re thankful to our friends and family, to the people who prayed and sent their energy Dara’s way from around the world. We’re thankful for the hospital here, the team they have here. I felt like we were in the right place at the right time with the right people.”
Those people include Chinnakotla; Pediatric Nephrologists Priya Verghese, MD, MPH and Clifford Kashtan, MD; Pediatric Gastroenterologist Catherine Larson-Nath, MD, CNSC; Pediatrician Niyati Patel, MD; and dozens of other care providers who helped manage the emergency illness and transplant.
“It seems so surreal to me,” Dara said. “It’s like I’m waking up from a crazy dream. It really doesn’t feel like it happened.”