Getting Sawyer Bailey to pause long enough for a kiss can be a challenge these days.
Carissa Bailey, Sawyer's mom: “Sawyer is a feisty ball of attitude. He’s very much a 3 year old. At this point, without seeing his scar, you would have no idea anything had ever happened to him.”
What happened to Sawyer began shortly after birth. Doctors in West Virginia diagnosed him with a biliary atresia, a condition in infants where bile can’t flow into the intestine, so it builds up in the liver, damaging it. Due to neglect, Sawyer was placed in foster care when he was 3 months old. The agency then placed Sawyer and his older brother with foster parents Carissa and Darla Bailey.
Carissa: "He was supposed to be almost four months, but he looked like a newborn. He was tiny, he was wrinkly, his skin looked dull and kind of yellowish gray. We called him our little potato because he just looked like a little thing, just a little nugget, really.”
The foster care agency had already set up an appointment four hours away for Sawyer at Cincinnati Children’s for treatment. Doctors found his condition progressively getting worse.
Amy Taylor, MD, pediatric gastrointerologist: “He actually ended up on a transplant wait list once he had the signs of end stage liver disease, it wasn’t working and doing what he needed to do, we had talked with them about the living donor related program.”
Most of the time a living donor is a close relative, such as a parent or sibling, but that didn’t stop Carissa from undergoing an extensive series of tests and evaluations.
Carissa: “I was told not to get my hopes up. That it was pretty unlikely that we would match.”
Also uncertain was Sawyer’s future with his foster family.
Carissa: “At the time, we didn’t know how long we would have him. We didn't know if he was going to be adoptable, or if they were going to help his birth family learn how to care for him and then reunite him, but we just knew that we wanted to help him in any way we could while we had him. I’d been his mom for over a year at that point. Even if I didn’t get to keep him, I wanted to send him back with every possible chance to survive.”
The odds were in Carissa and Sawyer’s favor. She was a perfect match. On June 3, 2016, surgeons at Cincinnati Children’s successfully transplanted a portion of Carissa’s liver to Sawyer.
Carissa: "The next time I saw him, he was in the ICU and I had come out of recovery they wheeled my bed into his ICU room so that I could see him and see that he was OK. I couldn’t get out of bed and I couldn't hold him. And he couldn't really be picked up, either. But we just got to, we held hands."
The liver is the only organ with the unique ability to regenerate. Carissa’s liver grew back to full size. And Sawyer’s will continue to grow with him. About a year after their transplant, their bond became permanent when the Baileys officially adopted Sawyer and his big brother.
Dr. Taylor: “Your belly is nice and soft. Perfect.”
As for his recovery, Sawyer visits doctors at Cincinnati Children’s for check-ups every three months.
Dr. Taylor: He’s growing, he’s thriving. And he didn’t say much, he’s talking and he’s communicating, and he’s just, he's done unbelievably well for all that he’s gone through and being so sick, so early and young in life. He’s done amazing.”
Carissa: “I hope he is able to do the things that he wants. But just continued health, for sure.”