Baby denied heart transplant due to disability, parents claim

Maverick's parents say doctors discriminated against her son. Photo: CNN

(CNN) - Just 8 months ago, Maverick Higgs was in the fight of his life after being born with a heart defect. That fight got even harder when doctors said he didn't qualify for a needed heart transplant.

It's the reason that the infant was denied that had his parents fighting mad.

Less than a year ago, Autumn Chenkus says she was told that Maverick was going to die. At just 6 months old, Maverick was living with both the heart defect and a rare genetic disorder - called Coffin-Siris Cyndrome - that causes developmental delays.

Because of that diagnosis, Chenkus believes that her son was denied the transplant because doctors at New York's Presbyterian Hospital thought they'd be wasting the organ on her son.

"I was scared that he was going to die," she said. "There was actually a point where we were planning his funeral."

Doctors said that Maverick was an undesirable candidate for a transplant because his genetic defect would limit his survival after getting a new heart. However, after doing her own research and talking to experts, she discovered that Coffin-Siris Syndrome would not limit her son's chances of survival.

In fact, Dr. Grange Coffin - the man for whom the syndrome is named - said it was wrong to deny someone a transplant because of the disorder. That led Maverick's parents to believe that doctors discriminated against their son.

"I told them I knew they didn't want to waste a heart on him because they felt like he was going to be delayed," Chenkus said. "hearts are very rare, but...Maverick is a baby, and he needed a heart."

Despite her repeated pleas, doctors continued to say that there was nothing they could do for Maverick. Doctors at Presbyterian Hospital declined repeated requests for comment from CNN, but in a statement, they said that their evaluations were conducted with "compassion" and that they held themselves to the highest ethical, medical and scientific standards.

Luckily, Maverick got better without a transplant and improved after being transferred to a new hospital without the same transplant concerns. That didn't stop Chenkus from filing a complaint against the hospital.

The state's Office for Civil Rights will review the complaint to see if Maverick was denied because of a disability.