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Baby with rare disease survives coronavirus and liver transplant before his 1st birthday

This one-year-old baby from Syracuse, New York, has been through severe health problems in his young life. Doctors—and even his family—feared he wouldn’t make it. But thanks to a life-saving liver transplant, this “miracle baby” survived and is now doing better than ever.

Kasen Donerlson was born on January 14, 2020, weighing eight pounds. Because of breathing complications and jaundice—which doctors said would go away as he got older—the newborn spent the first three days of his life in the neonatal intensive care unit (NICU).

The baby was eventually discharged, but his mom, Mitayah Donerlson, noticed that her son wasn’t getting any better. The jaundice was still there, he had dark urine, and he had difficulty gaining weight. The poor infant also suffered from recurring fevers that most over-the-counter drugs couldn’t treat.

Mitayah knew something was wrong, so she sought further evaluations for Kasen.

Around two months after his birth, he was diagnosed with a severe case of biliary atresia, a condition in which the ducts that carry bile from the liver to the gallbladder are scarred and blocked.

A few days after the heartbreaking diagnosis, Kasen underwent an emergency operation to repair his bile ducts. However, the surgery didn’t work, and doctors determined that they had to take a more drastic approach: Kasen must undergo a liver transplant.

“We had endless hospital visits and we would be there for five or seven or 10 days because of the severity of the disease and the complications that Kasen was having,” Mitayah recalled. Kasen also had to be placed on a feeding tube.

After some research, Mitayah determined that the Children’s Hospital of Pittsburgh would be the best place for the procedure, although it was about a five-and-a-half-hour drive from their Syracuse home. She was also able to get Kasen onto the transplant waiting list at the hospital.

In November, as they were waiting for news about the availability of a liver donor, the unthinkable happened.

“On Nov. 21 he woke up that morning and was extremely hot. His body was like touching a stove,” Mitayah recalled.

They rushed him to the emergency room of Upstate University Hospital in Syracuse. The worried mom cried because they knew the hospital was going to admit them. However, she didn’t expect them to tell her that 10-month-old Kasen was COVID-positive.

“Immediately, I go into tears because I didn’t think he was going to make it. I didn’t think he was going to suppress the COVID and make it past that stage,” Mitayah said. “I felt like I failed him as a parent. I felt like I didn’t protect him. I felt like I didn’t protect my household enough.”

Mitayah, her niece, and her significant other had also tested positive for the virus.

Kasen spent around three days in the hospital to recover from COVID. His only complication was a fever, while his other family members didn’t suffer any complications. Thankfully, they all recovered.

Two weeks later, in early December, Mitayah got the call she had been waiting for: there was a liver available for Kasen!

The baby underwent the operation on January 2, less than two weeks short of his January 14 birthday. Doctors used the left portion of the liver, which was the perfect size for Kasen.

Once the grueling 10-hour liver transplant was over, Mitayah immediately noticed an improvement in her son.

“His eyes have always been greenish and yellowish, his entire life, and he woke up from surgery with clear eyes,” she said. “I was overjoyed by seeing that.”

With his new liver, Kasen is expected to live a normal and healthy life!

He celebrated his first birthday in the hospital on January 14. Mitayah said he is already gaining weight and is more alert and “perkier” after the surgery.

The happy mom is grateful to the liver donor and all the people—living and deceased—who volunteer to donate their organs.

“They made a way for Kasen, a way for my baby, to have a second chance at life, a life that he was not promised to see,” Mitayah said. “I’m just thankful for them.”

Although Kasen is doing so much better now, their journey is far from over. The baby may need to stay in the hospital for the next six months because of recovery times and procedures. This means that his family might have to relocate from Syracuse temporarily.

Mitayah has been looking for affordable housing near the hospital, but COVID-19 restrictions have made it difficult for her to find a place that can accommodate their entire family.

If you would like to help the Donerlsons with Kasen’s hospital bills and their temporary housing, you may donate to this GoFundMe or via PayPal and Cash App ($liver4kasen).

Share Kasen’s story with your friends and family so more people can send help!

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