Lincoln Seay, 7 months, who was born with a rare birth defect, is recovering after receiving a heart transplant last week, just days before his parents and doctors feared he would run out of time.
A 7-month-old Alaska boy with a failing heart was days from death less than a week ago, when a rare, last-minute transplant at Seattle Children’s answered his parents’ prayers.
Lincoln Seay, who was born with a severe heart defect, was alert and kicking this week, despite a tangle of tubes and the long scar that covers the golf ball-sized heart now beating in his chest.
The boy had been waiting since November for a pediatric heart transplant his parents and doctors feared might come too late.
Instead, he’s an example of the hope that can follow tragedy when parents of children who die opt for organ donation, experts said.
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“He was right on the edge,” said Dr. D. Michael McMullan, Seattle Children’s surgical director of heart transplantation, who leads the center that performed 21 transplants last year, among the most in the nation.
“We have a list of patients and he was the one we were most concerned about.”
Rob and Mindy Seay, the baby’s parents, had been told it could take 90 days for a donor organ to become available.
The offer came last Thursday evening, on day 89.
“The last two days, you could just tell they were his last days,” recalled Rob Seay, 37, Lincoln’s dad. The baby’s skin was dusky purple and he slept most of the time.
The Seays, who have three older children, were sent to Portland, Ore., last summer, when scans during pregnancy showed the baby had Heterotaxy syndrome. The birth defect causes the heart and other organs to develop on the opposite side of the body.
In Lincoln’s case, his heart was on right side, not the left, where it normally develops, and there were other problems.
At first, doctors at Portland’s Legacy Emanuel Medical Center thought the problem could be solved with surgeries, including an operation performed when Lincoln was just 12 hours old.
The family returned to Alaska, where Mindy Seay, 35, works as a paralegal, and Rob Seay is a server at a popular restaurant. But Lincoln’s heart began to fail in October and he was sent back to Portland — and then to Seattle Children’s, which routinely handles the most complicated transplant cases, McMullan said.
They’ve lived since then in Seattle’s Ronald McDonald House. Their older children — ages 16, 8 and 6 — have enrolled in the Hutch School, operated by the Fred Hutchinson Cancer Research Center and Seattle Public Schools, which offers education and support to school-age patients and family members of patients undergoing treatment nearby.
Lincoln’s wait was not unusual. He was one of two babies under age 1 in Washington state and 43 across the nation on the list for heart transplants, according to data from the United Network for Organ Sharing (UNOS). Twenty-five babies died last year waiting for hearts.
In Washington last year, there were six transplants in such young children, and 121 across the nation.
The chief challenge is a shortage of donor organs, including hearts, from infants and toddlers matching the size and shape needed for babies such as Lincoln.
“Because of his size, it had to be a young child,” McMullan said.
Nationally, less than half, 48 percent, of those eligible have marked themselves as designated donors on driver’s licenses, according to the advocacy group Donate Life America. The proportion is far higher in western states, including Washington, where the rate is about 80 percent.
No information is available about the child who donated the heart Lincoln received. Because of privacy restrictions, information about even the region where it was obtained is kept secret.
There’s a chance the families could meet in the future; some do, with help from agencies such as LifeCenter Northwest, the regional organ-procurement organization. Mindy Seay, however, has already posted an open letter to the mother of the child who was lost.
“I will treasure that heart more than I’ve ever treasured any gift,” she wrote in a blog post. “I will care for that gift to the very best of my ability and will be sure we always give reverence and respect to the child and the family from which it came.”
Most parents who’ve lost children take comfort in knowing the organs have helped another child live, said Kevin O’ Connor, LifeCenter’s president and chief executive.
Lincoln’s prognosis is good, McMullan said. He’ll face challenges as he recovers from surgery and lives with the strong drugs that prevent his immune system from rejecting the heart.
But the heart will grow with Lincoln and could last 20 years or more.
“I hope he plays football or does whatever he wants to do,” McMullan said of his young patient. “He’s supposed to live.”