Three years ago we received a call about a three-month-old boy, Sawyer, and his three-year-old brother, Gavin. We were told that there was something wrong with the baby’s liver and were asked if we were willing to take them.
At the time, we didn’t know how long we would have them. We didn’t know if they would be adoptable. Nor did we know if they were going to help his birth family learn how to care for him and reunite him. But we did know that we wanted to help in any way we could.
I am a foster parent
When Sawyer came to us he was about four months old, weighing eight pounds. He looked like a newborn. He was tiny and wrinkly and his skin was a dull, yellowish gray. We learned that he has biliary atresia, a disorder of the bile ducts that causes progressive jaundice in babies. So, when he was four weeks old, he underwent a surgery called the Kasai procedure. This used parts of his intestine to rebuild the damaged bile ducts. The procedure failed, and toxins continued to build up in his body.
At this point, we were living in West Virginia, so we took him to Cincinnati Children’s to learn what was needed to save his life. There, we found out that he needed a feeding tube, medications and eventually a new liver. The only treatment was a transplant, because he was showing signs of end-stage liver disease. So he was placed on the waiting list.
I cried at the idea of this. The guilt. How could I be anxiously waiting for someone else’s child to die so that mine could live? It wasn’t fair. But then good news came. We learned that he could take a partial liver from a living donor. We just had to find a match. Relatives are the most common choice for living donation, but Sawyer was still in our care as a foster child and blood relatives were out of the equation.
I am a match
I fit the criteria and underwent a series of tests. They looked at my blood work, blood type, medical history and imaging to see if my blood vessels were the right size. I wasn’t just a good match. I was a perfect match. What are the chances of that? A perfect match to a child I didn’t birth. We were elated. I’d been his mom for over a year at that point. In the event that we didn’t get to keep him, I still wanted him to have every possible chance to survive.
I am a living-transplant donor
On June 3, 2016, I gave Sawyer 15% of my liver. He looked immediately better. The yellow in his eyes was gone. At the same time, recovery wasn’t easy for anyone, but we got there. We traveled back to Cincinnati every few weeks for follow-up.
I am a mom
On January 13, 2017, we finalized the adoption of Sawyer and Gavin. Our family felt complete. We were happy and everyone seemed to be healthy.
I am a cancer mom
Until Sawyer developed a fever that wouldn’t go away that following February. We took him to our local emergency room and he was admitted for observation. He was eventually transported to Cincinnati Children’s and we learned that his journey was far from over. He developed post-transplant lymphoproliferative disease and had grown tumors in his lungs. We couldn’t believe our ears. He beat liver disease and wound up getting a form of cancer? We learned that this disease is driven by the Epstein-Barr virus (EBV), or mono, infection. Consequently, Sawyer was at an increased risk for developing it because of his age, the fact that he had never had it before, and because I had.
He was treated with six rounds of an antibody and two cycles of a low dose of chemo. As a result, the tumors eventually shrunk. They adjusted his medications some and it seems to be working.
I am home
I am so happy to say that we are home and adjusting to life with our three-year-old feisty ball of attitude. Unless you know Sawyer’s backstory, you would have no idea that he’s been through liver failure and cancer. He loves to be outside. He loves to dance. I am so happy that I was a perfect match and able to give him a chance to not only survive, but thrive. We now look forward to navigating the “normal” things, like school, friends, and doing whatever makes him happy with his continued good health.
To learn more about our Liver Care Center, please visit our website or call 513-803-1791.
