Five-Month Old Denied Heart Transplant due to Rare, Genetic Disease (Video)

First Posted: Dec 01, 2013 05:11 PM EST
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At five months old, Maverick, who was born with a severe heart defect and now suffering heart failure after failed heart surgeries, was denied the option to receive a heart transplant as doctors confirmed that his rare and potentially fatal condition, known as Coffin-Siris Syndrome, put him at a high risk for tumors and infections.

"This decision was based on the medical implications of his coffin-Siris syndrome, which would limit his survival and potential benefit from the transplantation," said a group of doctors, according to a letter from CNN. Their decision was signed by Dr. Linda Addonizio, the Director of the Program for Pediatric Cardiomyopahty, Heart Failure and Transplantation at NYP/Columbia.

At this time, doctors had advised that the parents bring their child home and enjoy the remainder of his six months of life. Of course, couple, Autumn Chenkus and Charlie Higgs, took the news rather hard regarding their child. Fortunately, they also took time to research the 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.

"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," Santen said.

However, even with Santen's response, the doctors still refused the transplant.

In August, the U.S. Department of Health and Human Services' office for Civil Rights reportedly carried out an investigation regarding the child's civil right who when he was denied the transplant due to his condition.

Yet the couple never gave  up hope for their son. After finally receiving intervention care at Boston Children's Hospital, Maverick is now doing much better and did not need a heart transplant, after all.

"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," Chenkus said, via CNN. "Maverick amazes me constantly."

Want to see Maverick? Check out this video, courtesy of YouTube.

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