Baby Denied of Heart Transplant because He has Rare, Genetic Disease

A baby who is dire need of a heart transplant was denied to receive the invasive treatment because he has a rare, genetic disease.

Maverick, five-month old, was born with a severe heart defect and is now in heart failure even after a couple of heart surgeries. The medical team spoke with his parents, Autumn Chenkus and Charlie Higgs, about the situation and their initial option for a heart transplant. They were told that Maverick isn’t qualified for a heart transplant because he has Coffin-Siris Syndrome which makes him at high risk of tumors and infections.

The doctors confirmed their decision with a letter to CNN, “This decision was based on the medical implications of his Coffin-Siris syndrome, which would limit his survival and potential benefit from transplantation.” The decision was signed by Dr. Linda Addonizio, Director of the Program for Pediatric Cardiomyopathy, Heart Failure and Transplantation at NYP/Columbia.

The doctors advised the parents to bring their child home and enjoy the last six months of his life. The couple wouldn’t believe that Maverick has no chance to survive due to his weak immune system as reasoned by the doctors. Chenkus researched about the Coffin-Siris Syndrome and reached out to Dr. Gijs Santen, a clinical geneticist at Leiden University Medical Center in the Netherlands and lead author of the study mentioned by the doctors.

Santen replied with, “There is no objective problem with the immune system (in children with Coffin-Siris).It is difficult to use infection risk as a reason not to perform a heart transplant.”

She immediately went back to the doctors and told them Santen’s response. However, they still refused to give Maverick a heart transplant.

In an interview with the CNN, Chenkus said that she told the doctor, “You don't want to waste a heart on him. You're trying to play God, and you're lying to me.”

In August, the U.S. Department of Health and Human Services’ Office for Civil Rights have decided to carry out an investigation regarding Maverick’s civil right when he was denied of a transplant because of his condition.

Now, Maverick is 1 year and 2 months, he can sit up unsupported and stand, he can even jump as long as someone holds his hands. He plays with his toys and can grip his bottle.

Chenkus told CNN with tears flowing from her face, “I'm glad I didn't give up and I'm glad I didn't lose hope, and I'm glad I didn't listen to the doctors. Maverick amazes me constantly.”

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