The Gift of Life
Worried that their 6-day-old daughter, Madeline, seemed unusually lethargic, Lorie and Matt Hunt visited their pediatrician in Puyallup.
By evening, Maddy became comatose and was airlifted to Children’s where doctors diagnosed her with citrullinemia, a rare inherited disorder in which her liver lacked an enzyme to metabolize some proteins, which results in a toxic accumulation of ammonia in the blood.
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Maddy’s doctors and nurses at Children’s stabilized her condition and taught her parents to control her symptoms through diet and medication. However, her parents would have to remain on guard against sudden rises in her ammonia level for the rest of her life—any spike could potentially result in brain damage and even death.
A new liver, which would produce the missing enzyme, would correct the problem. “It was a clear decision,” her mom recalls.
Waiting for an organ
Because organs are scarce, it was nearly six months before the Hunts received the call that a matching organ was available. At that point, Maddy’s transplant team had one hour to decide if the donor organ was the very best match for her. During that hour, if the team had not been able to contact the Hunts, Maddy would have missed her transplant opportunity and continued on the waiting list.
Maddy’s mom remembers this time vividly. “We lived as if the call would come any minute. I never left the house without thinking, ‘What if it’s today?’ When the liver arrived, it was a hallelujah moment. We were scared, but so full of hope.”
Once the go-ahead decision was made, the Hunts rushed to Children’s, where Dr. Patrick Healey, division chief of Pediatric Transplantation, performed the 10-hour operation to give Maddy, then 10 months old, her new liver. Unfortunately, a clot developed in her portal vein, blocking the primary blood supply to the liver, and Maddy’s new liver failed within five days.
A second liver is needed
Even though the most advanced care for liver failure is available at Children’s there was nothing that could be done. Without a second liver, Maddy would likely die within 48 hours. Her parents went public with their story to encourage others to consider organ donation.
Madeline Hunt
At the same time, a different family faced an agonizing situation of their own—their teenage son was on life support with no chance of recovery. They decided to honor his life by choosing for him to be an organ donor. Nearly 40 hours after Maddy’s first liver failed, the teen’s adult-sized organ was offered for transplant. Healey performed a split liver transplant—Maddy received the smaller left lobe of the liver, and the larger right lobe was transplanted into an adult.
“It was bittersweet to realize what another family had to lose in order for us to gain the world,” recalls Lorie Hunt.
Maddy Hunt is now a social 3-year-old who started preschool in fall 2005. “Maddy’s care team’s expertise and even the loving way they greet her give us a real sense of security and faith in her future,” says her mom.