A Spanaway girl who waited seven months for a second heart transplant, only to have it fail, has dodged the odds, doctors say — receiving a rare third donor heart within a matter of days.
Eight-year-old Aiyana Lucas surprised even the surgeon who performed the latest transplants, one on July 3, and then a second, hectic, operation on July 6, when the third-grader’s window for survival was closing.
Last Tuesday, she was stringing beads, drawing pictures and giggling with her grandpa during a sun-dappled walk.
Replacing ailing hearts:Did you know …
heart transplantswere performed in the U.S. last year
transplants were in children10 and younger
children 10 and younger are waiting for hearts
transplant patients (of all ages) had two previous transplants
kids 10 and younger have received three hearts since 2005
Source: United Network for Organ Sharing
“It makes you believe in a lot of things,” said Dr. Jonathan Chen, co-director of the Seattle Children’s Heart Center and division chief for pediatric cardiothoracic surgery. “It shows that transplantation is completely unpredictable in a spectacular way.”
Aiyana is the third child in the U.S. 10 and younger in the last decade to receive three hearts or heart-lung combinations — and one of three dozen patients of all ages, according to figures from the United Network for Organ Sharing (UNOS).
The rare transplant highlights both the scarcity of donor organs, especially for young children, and the ethical decisions surrounding their allocation, experts say. Last year, only about 2 percent of the 2,655 heart transplants in the U.S. went to children in Aiyana’s age group, according to the Organ Procurement and Transplantation Network (OPTN). Right now, more than 200 kids 10 and younger are waiting for hearts, raising questions about how doctors decide who gets more than one.
“There’s no kind of policy that sets an upper limit for the number of transplants somebody can have,” said Dr. David Klassen, chief medical officer for UNOS, the private, nonprofit federal contractor that oversees organ transplants.
Records show that one person in the U.S. has received six kidneys, while another received nine organs — undergoing three, three-organ transplants. Two people in the U.S. have received four heart or heart-lung transplants since 2005, UNOS says.
“It comes down more to the judgment of the physicians taking care of the patient,” Klassen said. Hearts are typically given to the sickest patients first, in widening circles of geography.
By those measures, Aiyana was unquestionably at the top of the transplant list. She had been hospitalized at Seattle Children’s since December after developing a rare reaction that caused the arteries of her first donor heart to narrow dangerously. She received that organ as a baby after being born with a severe heart defect.
Doctors were waiting for a new heart that matched not only for size and blood type, but also for tissue type. Aiyana had developed coronary artery disease likely caused by the effect of antibodies she developed against the first donor’s tissue, a mismatch in the human leukocyte antigen or HLA, which regulates immune response.
On July 2, after learning a new heart was available, Promeese Lucas, 33, Aiyana’s mom, alerted friends and family:
In Washington state, there are three ways to register as an organ, eye and tissue donor:
• In person: When you apply for a driver’s license, instruction permit or identification card. The donor symbol will be added to your card and your name sent to an organ-donor registry.
• Online: Go to lcnw.org and add your name to the registry.
• By mail: Send a letter with your name and address to LifeCenter Northwest, 3650 131st Ave. S.E., Bellevue, WA 98006.
“AIYANAS HEART IS HERE AND IT’S A AWESOME MATCH,” she wrote in an email.
“We can’t lose her”
The next day, July 3, Aiyana went into surgery in the late afternoon. By 6:30 p.m., her parents were told the new heart was in place, working fine. A little more than three hours later, doctors escorted Promeese and her husband, Kevin Lucas, 35, into a quiet room on the Seattle Children’s transplant floor.
“They said, the heart, it doesn’t want to beat,” Promeese Lucas recalled. “When they put it in, that thing was beating great, that joint was jumping.”
Then it stopped — and doctors couldn’t get the delicate organ to start again.
“I don’t think we’ll really know why,” Chen said. “The heart just wouldn’t pump.”
Later examination revealed the heart had been so damaged it never would have worked, Chen said.
That left Aiyana with almost no options. She was placed on an artificial heart-lung machine, but doctors warned that could only last for several days. The child was added back to the heart-transplant list July 5. Her status was 1A, the most critical, but this time, doctors left out the matching HLA requirements.
“Everyone was like, we can’t lose her,” Promeese Lucas recalled. “We had everybody on that side of the floor praying.”
The odds were long. Even without strict organ-matching requirements, the median waiting time for a heart at Seattle Children’s is nearly four months. Nationwide, that wait is more than seven months.
But a day later, Promeese Lucas got the word: Unbelievably, a third heart was available.
“The doctor told me, ‘If this works, she’ll be the luckiest girl I know,’ ” she recalled.
That operation went smoothly. By the next weekend, Aiyana, a tall girl with tight braids and a wide smile, was walking the hallways.
“It’s amazing how well she’s done,” Chen, her surgeon, said.
Aiyana was discharged Friday evening. Her family, which includes dad Kevin, a customer-service representative for Comcast, and sister Madison, 6, will take turns staying with her at the Ronald McDonald House for a couple months while she undergoes stabilizing treatment.
Then, her mother says, they’ll all finally go home.
“What we’re looking forward to most is her bossing everybody around,” she said.
Doctors will monitor Aiyana carefully, especially for any signs of reaction to the mismatched HLA in the new heart. So far, she shyly says she feels “good.”
How many chances?
Cardiac re-transplants in children are risky, with a survival rate of about 60 percent at five years, according to a 2006 study in The Journal of Heart and Lung Transplantation.
“The hard decision for any of us in the heat of that moment is, do you follow statistics?” Chen said.
Aiyana’s new heart could likely last for years, even a lifetime, Chen said.
But if there are problems, it will raise an entirely new set of questions, said Art Caplan, director of bioethics at New York’s Langone Medical Center.
“Where does it end?” he said. “If this kid needs four hearts, the likelihood of success goes to zero.”
Transplant doctors are always weighing such difficult decisions, Chen said.
“By definition, if you give a heart to her, you’re taking it from someone else,” he acknowledged.
There are conditions in which re-transplant should not occur, said Klassen, the UNOS medical director. They include a patient with an active infection or a late-stage cancer, or one likely too weakened by previous surgery to survive.
Overall, however, it’s up to the transplant team to make the call. Most are very motivated to save their patients — as they should be, Caplan said.
“They have an obligation to their patient. Once they start, they have to give them what they get,” he said. “If you leave it up to transplant teams, they’ll use every organ they can get their hands on.”
Caplan said he favors limits on the number of organs any one patient can receive, but he also doubts any such restrictions will ever be imposed.
“Doctors can’t bring themselves to do it,” he said.
For now, in Aiyana’s case, the question is settled. With every beat of her new heart, she appears to be getting stronger and healthier. Promeese Lucas said she is deeply grateful to the three families who made the difficult decision to donate their loved ones’ organs.
Aiyana’s first donor was a 6-month-old girl who drowned in North Carolina. No information has been released about the two new donors. Because of the four- to six-hour window for transporting donor hearts, it’s likely they were recovered regionally, said a spokeswoman for LifeCenter Northwest, which arranges donations and transplants in Alaska, Montana, North Idaho and Washington.
Doctors and transplant-agency officials say omitting further details protects the privacy of grieving families.
Promeese Lucas said she’ll write letters to the families, thanking them and asking whether they’d like to be in contact.
Meanwhile, she credits her family’s unwavering faith and constant prayers for Aiyana’s outcome.
“God will use whoever he can to get to whoever he needs,” Lucas said. “She’s got stuff to do. She’s got this journey ahead.”