My daughter is healthy today because of a liver transplant system that no longer exists
Bobbi Yargar, Opinion contributor . Published Aug. 8, 2019
Original article posted here.
When I was expecting my daughter, Evelyn, I eagerly anticipated her first year of life. I imagined celebrating every milestone — bonding with her as a newborn, seeing her smile for the first time, saying her first word.
I didn’t think of feeding tubes, long hospital stays or an organ transplant. For Evelyn, the first year has included all this and more. But thanks to a short-lived change in the way liver donations were allocated to patients in need, my daughter received a liver transplant on May 20 and now has a better chance to live a full life.
I am so grateful, yet also disheartened, because the allocation policy that resulted in a transplant for Evelyn was gone just days after it was rolled out. That means another mom like me might not receive that phone call with good news.
Evelyn — or “Pickle,” as her dad calls her — came into this world in March 2018 at just 34 weeks, weighing less than 3 pounds. She spent her first month in the hospital and, just a month after we brought her home, we found out why. Genetic testing revealed she had Alagille syndrome, a genetic disorder that can affect the liver, heart and other parts of the body. The most common characteristic of Alagille syndrome is liver damage caused by abnormalities in the bile ducts. In December, we received the news that baby Evelyn needed a liver transplant.
Our family moved nearer to UPMC Children’s Hospital of Pittsburgh. While we don’t have any immediate family nearby, moving meant we were closer if and when the call came to let us know that a liver was available for Evelyn.
When Evelyn was added to the organ donation wait list in April, it was under the liver allocation policy in place at that time, which was map-based and allocated livers within 11 regions and 58 donor service areas.
This policy lacked any special consideration for pediatric transplant candidates. We knew it would be a waiting game and were told it would likely take three months. What we did not know was that the organization that has the federal contract to oversee the federal transplant matching system, United Network for Organ Sharing, was implementing a new policy for liver allocation.
Under the new system, the sickest patients within a 500-nautical mile circle from a donor hospital get first priority. More important for Evelyn, it also gave sick children a better chance of getting livers from other children whose lives have sadly ended too soon.
The new 500-mile circle policy was only in effect for a little over a week, but in that period, Evelyn received her liver transplant, due in large part to this change in the allocation policy. Had it been just one week earlier or later, because of where we live we would not have received the call.
Under the map-based system, our transplant center and the donor’s hospital were in different regions. It is possible that a less sick adult patient — one who might have been able to wait longer than Evelyn — could instead have been transplanted that day, not because of medical need but because of our address.
Every child deserves lucky timing
I’ve seen some debate about liver allocation, and it’s heartbreaking for everyone involved. Evelyn’s donor was a teenager who died tragically young. We all have an obligation to ensure that this precious gift of life is treated with the utmost respect. It is difficult to hear and read arguments that assert donated livers should remain local, when as a mom all I want is for the sickest and most in need to receive the care they need.
Under the allocation policy that helped Evelyn, had there been another pediatric patient awaiting a liver transplant who lived closer to the donor, they understandably would have received the call first. But because on that day there wasn’t, the matching system extended outwards until it found Evelyn.
We are fortunate.
Just after Evelyn’s transplant, a judge ordered that the system revert to the map-based policy while a lawsuit challenging the 500-mile circle policy plays out. My heart goes out to other families, like ours, who only want their child to receive the care they need. When your child is sick, which side of an arbitrary line you live on should not determine whether your child receives a liver transplant.
Despite all her very serious health concerns, Evelyn is like so many kids her age. She adores Elmo. We watch funny videos and read books. Our two dogs keep careful watch over her the rare times we’re at home. As Evelyn recovers from her transplant, we are so grateful for her donor and the circle policy that will make it possible for her to grow. Other children should have the same opportunity as Evelyn to live healthy, happy lives.