Five-month old Maverick Higgs was born with a severe heart defect, and two surgeries later was still in heart failure. He needed a heart transplant, and fast. But after initially saying he was a candidate, the child's New York-Presbyterian doctors decided there was nothing more they could do to help. They said Maverick had six months to live.
The official reason given for denying Maverick the transplant was because he suffered from Coffin-Siris, a rare genetic defect that the doctors said would put him at risk for infection and tumors. They provided Maverick's parents with a study on the defect.
But when Maverick's mother, Autumn, contacted the study's author, she discovered that there was no evidence to support the theory that children with Coffin-Siris had compromised immune systems.
She was confused, but excited. But when she told the doctors, they still refused to go forward with a transplant to save Maverick's life.
And Maverick's mother figured out the most likely reason why was because the genetic defect did have some documented effects — namely developmental disabilities.
This weekend, CNN published a great, in-depth look at organ transplants and the vague, shrouded methods that doctors use to decide who gets a transplant and who doesn't. In the past, physicians were straightforward about denying transplants to disabled patients — "We do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations," one doctor explained, denying a child a transplant in 1995.
Maverick's parents applied to four different hospitals, three of which turned her down, citing the Coffin-Siris defect or, in one case, "the big picture."
But CNN talked to six different Coffin-Siris experts, all of whom confirmed that the defect was not a valid reason to deny a transplant.
"I've never seen a child with Coffin-Siris who was immune compromised," said Dr. John Carey, a pediatrician and geneticist at the University of Utah School of Medicine who has been studying the genetic syndrome for 36 years. "I don't think it's a valid reason to deny a transplant."
"(Coffin-Siris) is not a reason to say no to a transplant," said Dr. Grange Coffin, who first identified the syndrome in 1970, along with his colleague at the University of California, Dr. Evelyn Siris. "I would say it's wrong to do so."
"We absolutely know this happens. It's a huge problem," David Magnus, the director of the Center for Biomedical Ethics at Stanford University told CNN. "It's real people sitting in a room making these tough decisions, and it's not surprising their own prejudices and biases influence them."
Magnus said he conducted a study that showed despite making no medical difference, more than four in ten doctors considered neurodevelopmental delays in transplant decisions.
And while the ratio of available organs to in-need patients makes it inevitable that some patients will die waiting, CNN has documented a trend of developmentally-challenged patients who were given multiple excuses for why they couldn't qualify.
Maverick finally got lucky — after being turned down by New York-Presbyterian, Children's Hospital of Philadelphia, and the Cleveland Clinic — Boston Children's Hospital agreed to take him on and consider him for a transplant.
Within three weeks, the doctors had adjusted his medication enough that his blood pressure went down, his blood-oxygen levels rose, he had more energy, he gained weight. The baby that once had six months to live didn't need a transplant anymore and was almost ready to go home.
But should Maverick ever need a transplant, the Boston doctors told his parents, they wouldn't let the Coffin-Siris affect their decision. He would be a candidate.
[Image via CNN]