In recent years, the Boston Children’s Hospital Heart Failure team has made significant strides in slowing the progress of heart failure in children. In some cases, disease progression has been slowed enough for the patient to be taken off of the heart transplant list for being “too well.”
The following is part two of a four-part series featuring Heart Center patients who were once listed for transplant but were removed thanks to successful medical management of his or her heart disease.
Maverick Chenkus was born with hypoplastic left heart syndrome (HLHS), a very serious heart condition in which the left side of the heart is underdeveloped.
Soon after birth, Maverick had his first open-heart surgery but then developed heart failure. He spent his first 8 months fighting for his life at a hospital near his home in New York. Doctors there told his parents, Nikki and Charlie, their son would need a heart transplant in order to survive. But the doctors refused to place Maverick on the heart transplant list.
“They said Maverick just wasn’t going to make it,” says Nikki. “I only believed it for about a day. Then I thought, no, this is not how this kid’s story is going to end.”
Nikki and Charlie embarked on a fierce campaign to fight for their son’s life. They contacted Boston Children’s, and the Heart Center welcomed Maverick as a patient.
Caring for Maverick’s HLHS and heart failure
When Maverick came to Boston Children’s, he was dependent on an VERY strong dose of milirinone through an IV. (Milrinone is commonly used to treat acute heart failure in children because it relaxes the muscles in blood vessels to help them dilate, or widen. This in turn lowers blood pressure and eases blood flow throughout the body.) After a catheterization to further dilate his arteries and a medication adjustment, the Heart Center weaned Maverick off of the IV and started a different, yet still aggressive, medication regimen of blood pressure modifiers and diuretics to address his hypertension.
After eight months as an inpatient in New York, Maverick was discharged four weeks after arriving at Boston Children’s.
Maverick never needed a heart transplant after all, and in February 2015, he had the third and final operation that is part of the standard treatment for HLHS. He celebrated his third birthday in September with a special party at preschool, complete with Elmo cupcakes and goody bags.
“He’s the toughest little kid,” says Nikki. “When we named him, we were just trying to think of a creative, original name. We never expected him to live up to his name in such a big way!”
Learn more about the Boston Children’s Heart Transplant Program.