A New York mother says her baby was denied a lifesaving heart transplant because he is developmentally disabled.
Autumn Chenkus claims doctors at New York-Presbyterian Hospital in Manhattan gave her 5-month-old son six months to live.
Her son Maverick was reportedly put on the transplant list on Mar. 18, but that doctors took him off two days later. They told Chenkus he could not be on a transplant list because he has a rare genetic defect, Coffin-Siris syndrome, that puts him at high risk for infections and tumors.
Chenkus says that’s not true. She found no study that showed people with Coffin-Siris have an increased risk of infections or tumors. In fact, she spoke with one study’s author who confirmed she was correct.
When she told doctors at New York-Presbyterian, they still refused to give her baby a new heart.
She says that’s when it dawned on her: doctors didn’t want to operate on Maverick because children with Coffin-Siris syndrome grow up to have intellectual and developmental disabilities.
She tells KTLA 5 she accused his doctor of discriminating.
“That’s ridiculous,” she recalls the doctor telling her back in March.
“You don’t want to waste a heart on him,” Chenkus replied. “You’re trying to play God, and you’re lying to me.”
Chenkus says doctors grew cold after Maverick was taken off the list.
She and the boy’s father, Charlie Higgs were reportedly told, "Take your baby home and love him for the time he has left.”
The hospital's medical director of pediatric cardiac transplant program Dr. Linda Addonizio stood by the decision.
"His genetic defect is associated with increased infections and tumors, which would be greatly magnified combined with the immunosuppression involved in transplantation," according to a note signed by Dr. Addonizio. "I discussed that this does not mean we are giving up on Maverick, but trying to improve his heart failure as best as possible and get him to gain weight.”
Chenkus contacted the author of a study that New York-Presbyterian cited to ask him if Coffin-Siris is a valid reason to keep Maverick off the transplant list.
Dr. Gijs Santen, from Leiden University Medical Center in the Netherlands, told Chenkus that children with Coffin-Siris don’t have compromised immune systems.
"It is difficult to use infection risk as a reason not to perform a heart transplant," Dr. Santen later told CNN.
The family filed a federal discrimination complaint against the hospital that stated: “The real reason the hospital is refusing to list our son or consider him for a transplant is the hospital’s perception that Maverick will be mentally and/or physically delayed. It is clear that the hospitals (sic) decision to deny Maverick a transplant is based on nothing more than this illegal discrimination.”
Transplant physicians have been accused of discriminatory practices in the past.
“We absolutely know this happens. It’s a huge problem,” David Magnus, director of the Center for Biomedical Ethics at Stanford University, told KTLA. “It’s real people sitting in a room making these tough decisions, and it’s not surprising their own prejudices and biases influence them.”
Maverick was eventually transferred to a new hospital that had no concerns about putting the baby on the transplant list.
However, Maverick, who is now one year old, got better without a transplant.
The U.S. Department of Health and Human Services’ Office for Civil Rights agreed in August to investigate the couple’s complaint against New York Presbyterian Morgan Stanley Children’s Hospital, Addonizio, and Dr. Wendy Chung, a geneticist at New York-Presbyterian.