Syracuse, NY — There were times when Mitayah Donerlson worried her infant son wouldn’t make it.
Kasen qualified for a liver transplant, but had to wait for a suitable donor. During that wait, he contracted Covid, pushing his eligibility back a month.
“Being completely honest, I immediately thought of death,’’ said Donerlson, who lives in Syracuse. “He was already fighting for his life, and then he gets Covid. My heart just dropped.”
But little Kasen, who will turn 1 on Thursday, is a fighter. He survived Covid-19, and then underwent a successful liver transplant. He’s now recovering in his hospital room at UPMC Children’s Hospital in Pittsburgh, Pa.
“It’s a complete miracle,’’ said his mom, who is renting a two-bedroom apartment in Pittsburgh so she can back and forth to the hospital.
Once Kasen is discharged from the hospital next week or the week after, he has to complete a series of clinical visits. That means Kasen and his mom will be in Pittsburgh for the next three to six months.
“I am just so very grateful,’’ said his mom, who also has a 5-year-old son.
Kasen’s ordeal started after his birth at Crouse Hospital, where he was extremely jaundiced. He came home, but wasn’t gaining weight. He was diagnosed in March with biliary atresia, a congenital condition which occurs when the bile ducts inside or outside the liver do not develop normally for some unknown reason.
Doctors decided to try surgery, which is called a Kasai procedure. The problem bile ducts are removed, and the small intestine is attached to the liver to give the bile a path to drain from the liver.
Donerlson said she was told it would take several weeks to see if the procedure worked.
“We went back and forth to the hospital,’’ she said. “It seemed endless.”
Doctors told her the procedure wasn’t working, and Kasen would need a liver transplant. In July, she traveled to Pittsburgh so Kasen could be evaluated, and then he was placed on the waiting list.
As Kasen waited, his liver function continued to decline, Donerlson said.
On Nov. 21, Kasen woke up with a fever.
“His whole body felt like it was on fire from head to toe,’’ his mom said.
She rushed him to Upstate University Hospital, where a test showed he had Covid.
“I just prayed he would be OK and able to come out of the hospital again,’’ Donerlson said. “I knew there was this potential all along he wouldn’t make it, but I prayed.”
Donerlson also wound up with Covid, but once Kasen’s fever broke, he had no other symptoms.
But having the virus meant he wouldn’t be eligible to have a transplant for 30 days. Donerlson was worried he’d miss his opportunity.
On Jan. 2, Donerlson got a call saying they had a deceased donor whose liver would be a good fit for Kasen. Donerlson packed their suitcases, got in the car and drove to Pittsburgh for the surgery.
Kasen got a new liver Jan. 3 in a nine-hour surgery, his mom said. He did well, and after a week she looked at him and noticed for the first him his eyes were clear, and not yellow.
“It’s a complete miracle,’’ she said. “There’s no sign of rejection. Now we just take it one day at a time.”
Kasen needs to remain in the hospital, but he’s alert and playful. Donerlson will stay there, and a fundraising campaign has been set up to help the single mom with expenses.
“We are so blessed,’’ Donerlson said.
The shortage of livers for transplants
In 2017, about 8,000 liver transplants were performed in the United States among both adults and children, according to the Mayo Clinic in Rochester, MN. But there are almost 17,000 patients on the waiting list in the United States for liver transplantation.
Elizabeth Doran covers education, suburban government and development, breaking news and more. Got a tip, comment or story idea? Contact her anytime at 315-470-3012 or email [email protected]
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