At five months old, Maverick Banks Higgs was fighting for his life at New York-Presbyterian Hospital while his mother Autumn Chenkus and father Charlie Higgs learned he was being denied a transplant, reports Fox 8 WGHP.  Maverick was born with hypoplastic left heart syndrome, a severe genetic defect his parents were warned about before he was born.  According to the Mayo Clinic, in hypoplastic left heart syndrome, the left side of the heart is critically underdeveloped.  At that time, Autumn and Charlie were given three options: terminate the pregnancy, carry the child to term and let him die naturally, or give him a series of surgeries that would, hopefully, keep him alive.

True to his name, Maverick was destined to be a fighter.  He had his first surgery when he was 4 days old at one of the hospitals in the New York-Presbyterian system.  The first surgery did not go as well as the medical team hoped and Maverick’s condition deteriorated.  His first Christmas was spent in the intensive care unit.  They performed the second surgery months earlier than they had intended, but that also did not go well.  Maverick had few options left.

On March 18 of this year, the medical director of the hospital’s transplant program sent Autumn a letter saying Maverick was eligible to be a transplant candidate.  Maverick’s parents were elated with this sign of hope for their young boy.  On March 20, the doctors called Maverick’s parents into a hospital conference room and told them they had just received the results of a genetic test showing Maverick had Coffin-Siris syndrome. Chenkus said the doctors went into detail about how because of this syndrome Maverick would grow up to have intellectual disabilities and developmental delays.  On March 22, the medical team said Maverick was no longer a candidate for a transplant given his Coffin-Siris syndrome, which predisposes him to immune problems, tumors, and infections.

Maverick was given 6 months to live, but his parents did not stop fighting.  After filing a complaint claiming that Maverick’s civil rights were being violated, they reached out to three top heart transplant centers.  Two concurred that he was not a good candidate for a heart transplant.  Finally, Boston responded and said that, while he could not be guaranteed eligible for a heart transplant, they would not immediately deny Maverick one.  After being taken by ambulance from New York to Boston on May 18, Maverick’s health has steadily improved.  Now, 7 months later, doctors continue to watch him, but note that his health is so much better he may not need a heart transplant after all.