Disabled baby denied heart transplant

NEW YORK -- Just eight months ago, Baby Maverick Higgs was in the fight of his life after being born with a heart defect.His fight got even harder when doctors said he didn't qualify for a heart transplant. Maverick's mother says she believes her son was denied a transplant because doctors though they would be wasting the organ on her son who suffers from a rare genetic disorder. Only six months after Maverick, his mother, Autumn Chenkus, heard the heartbreaking news that her son was going to die.He didn't want to play. He didn't want to be touched. He slept all day, every day. He was miserable, Chenkus said. Maverick was just 6-months-old and desperately needed a new heart. But his doctors at New York Presbyterian Hospital said no.I was scared that he was gonna die. Every day, I just, it's the only thing that I thought of. There was actually a point where we were planning his funeral, she explained. Maverick, who is 1-year-old now, was unlucky enough to be born with two medical problems -- the heart defect and a rare genetic disorder. Doctors said he was an undesirable candidate for a transplant because his genetic defect would limit his survival after he got a new heart.Not willing to accept the doctor's decision on her son's fate, Chenkus decided to do her own research -- research she says contradicted the doctor's statement. Chenkus asked some of the world's top experts about her son's disorder, called Coffin-Siris Syndrome, and they said the syndrome would not limit Maverick's chances of survival with a new heart. Dr. Grange Coffin, the scientist who discovered the syndrome, said it's wrong to deny someone a transplant because of the syndrome. So, what do Maverick's parents think is the real reason the hospital denied their son a heart transplant? They think it's because his genetic defect makes him developmentally disabled. I told them that I knew they didn't want to waste a heart on him because they felt like he was going to be delayed. Hearts are very rare, and I understand that. But, I also understand that Maverick is a baby and he needed a heart, Chenkus said. Maverick's mother explained she felt as if the hospital was discrediting her son's life and future, saying if they were to say otherwise they would be lying.Maverick was dying. Chenkus pleaded with his doctors. I just said will you guys please reconsider this. Reconsider a transplant for Maverick. And, 'Sorry. There's nothing we can do about it. Sorry.' and they just get up and walk out of the room. That was it. And just left me there. I remember I was just laughing because I was in shock. I was laughing with tears streaming down my face because I was in shock. I could not really believe that was really happening. We're talking about my son's life, and you're looking at your watch and just walked out on me, she said.New York Presbyterian Hospital denied multiple and repeated requests for comment. In an interview, they stated evaluations are conducted with compassion and bring the best ethical, medical and scientific principles to the process.Maverick's parents did not give up. Instead, they filed a federal discrimination complaint against the hospital and got him transferred to a new hospital that didn't have the same transplant concerns. Eventually, it turned out Maverick got better without a transplant. But that hasn't ended the controversy about whether the transplant doctors discriminated against this patient with disabilities. Maverick's family did file a complaint against the hospital. The office for civil rights will now review that complaint to see if Maverick's transplant was denied because of his disability.