Two days after giving birth, Nicole Pendino watched as her son became stiff as a board and turned blue.
“He was pretty much dying in my arms,” Pendino said.
Her son, Clay was rushed to Kosair’s hospital and given emergency heart surgery. He was diagnosed with hypoplastic left heart syndrome, which impacts one out of every 4,344 babies born in the United States, according to Centers for Disease Control and Prevention.
“It was a big blow for a brand new mother and totally unexpected,” Pendino’s mother, Cathy said.
The experience motivated her to become a nurse at WKU, Pendino said.
Hypoplastic left heart syndrome (HLHS) is a birth defect and a congenital heart defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly, according to CDC. In order to help restore the heart function three surgeries are involved: Norwood Procedure, Bi-directional Glenn Shunt Procedure and Fontan Procedure, according to CDC.
Congenital heart defects are the number one birth defect diagnosed in America as well as the leading cause for infant deaths.
Three months after Clay was born he had his first open heart surgery and it was successful; however on Clay’s first birthday, he had his second open heart surgery and it didn’t go as smoothly, Pendino said. Clay went into cardiac arrest and within the complications of his surgery he had a stroke, which caused him to be paralyzed on his left side, Pendino said.
Unfortunately, within the early years of Clay’s life he was diagnosed with several other medical issues including: chronic lung disease, a genetic clotting disorder, gastroparesis, chronic chorea and failure to thrive, Pendino said.
“He just got the luck of the deal,” Pendino said.
With these medical issues that Clay has, he struggles with gaining weight and breathing. Clay has many medications, treatments, inhalers and physical therapies he has to have to keep up with his health. Hospital bills and medications add up and can be pretty expensive. Before Pendino’s insurance, Kentucky Medicaid, came through she was sent the hospital bill for what was due when Clay was sent to Kosair’s the first time, Pendino said. It was over $1 million and still to this day she kept the bill. Luckily Kentucky Medicaid paid for almost everything she owed, Pendino said.
“He is a million dollar child and he isn’t even 10 yet,” Cathy Pendino said.
The average cost for an open heart surgery not including, hospital stay and hospital fees is $324,000, according to a 2008 Millman report on Investopedia.
Now at WKU Pendino is navigating more than just finals, she is striving to raise a normal, healthy son.
Balancing school and raising her son is not easy, Pendino said.
“I probably cry once a week,” Pendino said.
Pendino’s mother helps her with Clay a lot with school and with anything she can’t be there for.
“It brought our family closer together it was an eye opener to what is really important in life,” Cathy Pendino said.
A lot of guilt can be felt when school work takes up most of your time rather than being with family, Stacey Hurt friend of 10 years said.
“Clay is number one in her life, everything she does is for him, she is an exceptional mom,” Hurt said.
Even through the tough times when Clay is sick or when he is getting stronger Pendino has a positive mindset of the situation, Garry Barmett, Pendino’s boyfriend of three and a half years said.
“She is a strong woman to deal with the issues he has,” Barmett said.
Pendino tries to have Clay’s life as normal as a healthy kid’s life would be; he goes to public school, rides the bus and is even a part of Cheerville Minions, a special ed cheer team, Tracey Kirk, twin sister of Hurt and friend of 10 years, said.
“She has raised a wonderful, respectful son,” Kirk said. “I hope when I become a mother I’m half as good as she is.”
With spring semester coming to an end Pendino has a lot more than exams on her mind. Clay is currently dealing with symptoms of heart failure. He has had a heart valve leaking since birth and their cardiologist that specializes in heart failures, has been trying to weed out what could be causing his symptoms, Cathy Pendino said.
“I couldn’t imagine a life without Clay, even on a bad day he can make you smile,” Cathy Pendino said.
When talking about the future for her son she started crying.
“I just try to give him the best life that I can,” Pendino said. “I hope we can make it to that level to see him go to college and have a happy, healthy life.”