Story by: Lynne Choate on October 18, 2019
Nicole Pendino has a courageous son. In fact, his nickname is “Courageous Clay.” Many members of his hometown community in Bowling Green, Kentucky, have rallied around him over the past 12 years. In 2017 when Clay’s heart condition worsened and he was added to the heart transplant list, he was literally fighting for his life while waiting for a heart transplant.
On Aug. 17, 2018, just days before his 12th birthday, Clay received the greatest gift — a new heart — at Norton Children’s Hospital.
To understand how Clay became so courageous, you have to start from the beginning. He was born with hypoplastic left heart syndrome, a condition in which the left side of the heart is critically underdeveloped, leaving the right side of the heart to do most of the work.
This rare and complicated heart condition led to Clay’s first open heart surgery within days of being born. A second open heart surgery was needed when he was 1, but did not go as smoothly as the first. Complications led to emergency follow-up surgery within days. During that surgery, Clay’s heart stopped five times.
He was placed on extracorporeal membrane oxygenation(ECMO), in which a machine circulates blood through an artificial lung and back into the bloodstream. Norton Children’s Hospital has been named an ECMO Center of Excellence – Gold Level, placing it among the world’s leaders providing this extraordinary treatment.
ECMO gives the heart a break in hopes of restoring its function. While on ECMO for seven days, Clay had a stroke that paralyzed the left side of his body.
Even at 1 year old, Clay already was earning his nickname, making a strong recovery so that he could make it through a third and eventually fourth surgery by age 3 — both of which were successful.
Through Clay’s journey, Nicole and her family found themselves spending more and more time at doctors’ offices with Clay. Nicole’s life revolved around follow-up appointments with cardiologists, ongoing evaluations with neurologists, various therapies so Clay could gain strength and continue developing, and managing medications. She and Clay were able to use several services offered through Norton Children’s Hospital Outpatient Center –Bowling Green, located on the campus of The Medical Center.
Part of Norton Children’s Heart Institute, affiliated with the University of Louisville, the outpatient center has pediatricians and specialists available for follow-up and ongoing medical management appointments. In addition to Bowling Green, Norton Children’s Hospital Outpatient Center locations in Frankfort, Owensboro and Paducah make it easier for families to get lifesaving heart care while staying as close to home and their own support system as possible.
As Clay grew, he was monitored regularly at the outpatient center in Bowling Green. There, signs started to emerge that his rebuilt heart was starting to fail, and his journey to a heart transplant began.
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Clay started seeing Joshua D. Sparks, M.D., a cardiologist who is a pediatric heart failure specialist with Norton Children’s Heart Institute and UofL Physicians – Pediatric Cardiology. Clay would have one of 10 heart transplants performed at Norton Children’s Hospital in 2018 — the most transplants completed in one year at the hospital.
Norton Children’s Heart Institute works closely with physicians and providers from UofL Physicians – Pediatric Cardiology, including cardiothoracic surgeons, to provide highly skilled care for each child.
Norton Children’s Hospital is home to the only pediatric heart failure and transplant program serving Kentucky and Southern Indiana. The program is made up of a specialized team that includes a heart failure cardiologist, electrophysiologists, interventional cardiologists, cardiovascular surgeons, transplant surgeons, cardiovascular anesthesiologists, intensive care physicians, specially trained nurses and pharmacists, social worker, child life therapists, a family support team and rehabilitation specialist.