Courageous Clay

Feb 17, 2023

February is American Heart Month, but it is also home to Congenital Heart Defect (CHD) Awareness Week: February 7-14.  Congenital Heart Defects (CHD) are abnormalities in the heart that happen before a child is born, and CHDs are the most common type of birth defect. These abnormalities can affect the structure and how the heart works and range from mild to critical. Statistics show that nearly 1 in every 100 babies are born wxith a heart defect in the United States each year. 1 in 4 babies will have a critical CHD and will need surgery or other procedures within the first year of life. As fate would have it, that is exactly what would happen to Clay Harris.      

When Clay was born in 2006, Nicole began noticing symptoms like poor eating, tiredness, and not fully crying. Within 48 hours, Clay went into cardiac arrest in his mother’s arms. It was later discovered that he had Hypoplastic Left Heart Syndrome. A birth defect that affects the normal blood flow through his heart, which amounted to a completely undeveloped left side of his heart. Clay was put into a drug-induced coma and at only a week old had a hybrid heart procedure at Norton Children’s Hospital in Louisville, Kentucky.

“He’s the best kid ever. He has been resilient. He has been through so much and has fought.”

Nicole, Clay’s mother

Clay arrived home for the first time at three months old. Still in critical health, Clay weighed only 6 lbs and was nutritionally supported through a feeding tube. Fast forward nine months, Clay is now 1-year-old and is undergoing his second open heart surgery. An assumed successful procedure resulted in complications leading to an emergency follow-up surgery within days. During this time, Clay’s heart stopped a total of five times. He was placed on Extracorporeal Membrane Oxygenation (ECMO), which provides life-saving therapy for children with lung and heart failure. ECMO consists of surgically placed cannulas, or tubes, in a child’s large vessels to allow an artificial pump and lung to provide heart support and oxygen to the body. This gives the heart a break, in hopes of restoring its’ function. Norton Children’s Hospital has been named an ECMO Center of Excellence and is among the world’s leaders providing this extraordinary treatment. Although this treatment can be lifesaving there are inherent risks. Clay suffered a stroke, stemming from a blood clot due to being on ECMO for seven days. The stroke paralyzed the left side of his body. Slowly recovering, Clay endured two more surgeries for other complications and immediate needs, all by the age of three.

Clay endured countless hours of physical therapy over the next several years. At age 11, new symptoms began emerging, and Clay often found himself out of breath. A routine visit to an Allergist office brought to light that there was something happening with Clay’s heart. Nicole immediately sought care with Dr. Joshua Sparks, a cardiologist and pediatric heart failure specialist with Norton Children’s Heart Institute.  Clay was placed on the heart transplant list. When his new, working heart would come, was always a complete guess for everyone involved. This chapter in Clay’s life was arguably the most trying, not only for him, but his mother as well. The beginning of the year, Clay was in the hospital undergoing testing to see if his heart and body could even sustain another surgery. He began wearing a cardiac life vest, a wearable defibrillator that can stop an abnormal heart rhythm without anyone’s help. People at risk of sudden cardiac arrest wear it while waiting for a more permanent solution. Clay was unable to attend school and needed around the clock care. This is the moment where Nicole was so thankful to have the care and support of The Kidz Club PPEC. When The Kidz Club Bowling Green opened in 2016, Clay was one of the first kids admitted and Nicole was able to work while Clay received the daily nursing care he needed.

“Without the support of The Kidz Club, I don’t know where we would be. Since Clay was unable to go to school and needed around the clock care, I would have had to stay home to take care of him. If I wasn’t able to work, I don’t know how we would be where we are today.”

Nicole, Clay’s mother

On August 16th, 2018, the news came through that Clay would indeed be getting a new heart. A few days shy of his birthday, Clay underwent another surgery performed by Dr. Baha Alsouf. 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. Although the surgery was a success, Clay still had a long road ahead of him. Complications arose from the transplant extending his hospital stay until the next month.

In January of 2019, Clay was admitted back into the hospital due to acute kidney failure, a side effect of his medications. At this time, he was also diagnosed with Dysautonomia, Clay’s vocal cords had become paralyzed, and he needed an implant for that as well.

Clay is now 16-years-old, is full of life and has a personality that invites you in! The Kidz Club PPEC has been fundamental in helping him get the care he needs and is a source of comfort for Nicole. All his needs are addressed and cared for at TKC. To replace Clay’s natural antibodies, depleted from countless procedures and medications, his IV treatment is also performed at The Kidz Club by their medical staff. If there is a lesson to be taught here, Clay wants it to be this, “Just be strong and never give up.”

Additional Links

Nicole, PPEC Nurse and Heart Mom

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