The first five months of Maverick Higgs’ life were a roller coaster ride that could have ended in his death have it not been for the determination and gumption of his parents Autumn Chenkus and Charlie Higgs. After denying the young boy a life-saving heart transplant, doctors at New York-Presbyterian Hospital told the couple to take their “baby home and love him for the time he has left," but that just didn’t sit right with Chenkus, CNN reported.
"The hospital first said the decision was based on Maverick being at a heightened risk for tumors and infection. We later learned that this was false information and that Maverick is not at a heightened risk for tumors or infection," Higgs said in a complaint filed April 16.
Maverick Higgs, named after Tom Cruise’s character in Top Gun, was born on Sept. 29, 2012 with a severe heart defect that required surgery just four days after he was born. Following two surgeries at New York-Presbyterian’s Morgan Stanley Children’s Hospital, Maverick was monitored in the hospital’s intensive care unit as his condition worsened.
Although their son's condition had taken a turn for the worse in March, Chenkus and Higgs were excited to find out that their son had been added to the transplant. However, two days later the couple’s joy turned back to sorrow when they were told he was being taken off the list. Doctors had diagnosed Maverick with a rare genetic condition known as Coffin-Siris syndrome which, according to doctors, compromised his immune system leaving him susceptible to tumors or an infection.
"His genetic defect is associated with increased infections and tumors, which would be greatly magnified combined with the immunosuppression involved in transplantation," read a note signed by medical director of Presbyterian's pediatric cardiac transplant program, Dr. Linda Addonizio. "I discussed that this does not mean we are giving up on Maverick, but trying to improve his heart failure as best as possible and get him to gain weight." Coffin-Siris syndrome is a genetic condition that leads to a delay in both physical and mental development. Children diagnosed with Coffin-Siris tend to speak, walk, and sit later than children unaffected by the condition. Less than 100 cases have been reported since it was discovered in the 1970s by Dr. Grange Coffin and Dr. Evelyn Siris.
Chenkus began contacting every specialist she came across on the internet in hopes of finding someone who could explain the validity of New York-Presbyterian’s transplant denial. Doctors who Chenkus had been in contact with said Coffin-Siris had no effect on the immune system or a possible infection. According to CNN, even Dr. Coffin said the condition is “not a reason to say no to a transplant.”
"New York-Presbyterian's transplant teams have evaluated thousands of patients for lifesaving transplants over the past 40 years,” the hospital said in a statement. “These evaluations are conducted with compassion, and include the input of physicians, nurses, social workers, and psychiatrists who bring the best ethical, medical, and scientific principles to the process."
When New York-Presbyterian denied the family in April, Chenkus began to explore other options with different medical centers. Attempts to get Maverick on the transplant list at the Cleveland Clinic and Children’s Hospital of Philadelphia were also denied. With hope dwindling, Chenkus got the best news of young Maverick’s life when Boston Children’s Hospital approved her son. In spite of the first bit of good news the family had received in months, she was even more shocked to learn that he may not need the surgery. A meeting on June 7 confirmed that Maverick would no longer require a transplant after his medication was improved and his weight increased. “Maverick amazes me constantly,” Higgs told CNN.
"The difference between Boston and all the other hospitals is the way they cared, the fact that they cared," Chenkus told CNN. "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."