Before my daughter, Evelyn, was born, I eagerly expected her first year of life. I imagined celebrating every milestone — bonding with her as a newborn, seeing her smile for the first time, hearing her say her first word. 1 didn't think of feeding tubes, long hospital stays or an organ transplant (移植). For Evelyn, the first year included all and more.
Evelyn came into this world at just 34 weeks, weighing less than 3 pounds. Genetic testing revealed she had Alagille syndrome, a genetic disorder that can damage the liver (肝脏) ,heart and other organs. Soon, we received the news that baby Evelyn needed a liver transplant. Our family moved nearer to UPMC Children's Hospial of Pittsburgh so that we were closer if a liver was available for Evelyn.
When Evelyn was added to the organ donation wait list, I was under the liver allocation policy in place at that time, which was map-based. This policy lacks any special consideration for transplant candidates. We were told it would likely take three months. Just then, a new policy for liver allocation was tried out. Under the new system, the sickest child patients get first priority (优先).The new policy was only in effect for a little over a week, but in that period, Evelyn received her liver transplant. Had it been just one week earlier or later, we would not have received the call.
As Evelyn recovers from her transplant, we are grateful for the change. I am also sad, because the new policy was short-lived. That means another mom like me might not receive that phone call with good news.
Other children should have the same opportunity as Evelyn to live healthy, happy lives. When it comes to liver transplant policy, we can and must do better for children.
