Ayva Nicholas-Smith
CONGENITAL HEART DEFECT
Alycia Nicholas remembers enjoying being pregnant with her daughter, Ayva, and there was excitement about the upcoming addition to the family. There was no indication that anything was abnormal with the pregnancy or the baby. Ayva’s birth went from “being one of the best days of my life, to being one of the worst,” recalls Nicholas.
Right after delivery, the medical team noticed that Ayva had a heart murmur and called in a cardiologist for a consultation. The cardiologist recommended a test called an echocardiogram, which uses high-frequency sound waves to take pictures of the heart. After the test, the cardiologist shared with Alycia (pictured at left) that her tiny newborn had a congenital heart defect called tetralogy of Fallot. Tetralogy of Fallot impacts the way blood pumps throughout the heart and body. In Ayva’s case, Alycia was told that Ayva would need open-heart surgery between 4 and 6 months of age. Ayva spent two nights in the neonatal intensive care unit, or NICU, and the family was sent home to prepare for surgery.
Ayva’s first open-heart surgery was scheduled when she reached 4 months of age and she had what is called a total repair for her defect. Ayva recovered in the hospital for two weeks and was released, but she was readmitted to the hospital for another two and a half weeks due to low oxygen. Soon after, she had her first cardiac catheterization, an intervention that can determine how well the heart is working and which allows for procedures to open blocked arteries. Ayva did indeed need to have a stent placed in her pulmonary artery, which was narrowed, inhibiting blood flow to the lungs.
After Ayva’s first surgery she had no pulmonary valve, so with time, her right ventricle became enlarged from working too hard, prompting a second surgery to place an artificial pulmonary valve. Ayva went through her second open-heart surgery at just 6 years old. After receiving that artificial valve, Ayva was prescribed antibiotics before any dental procedure to prevent endocarditis, which is an infection caused by bacteria in the bloodstream that settles into the heart lining, a heart valve, or a blood vessel. Unfortunately, less than two years later, Ayva ended up contracting endocarditis, which required a third surgery to replace her infected pig valve with a human valve. Ayva was nearing her 8th birthday at that time.
In Ayva’s short 10 years of life, she has endured a total of three open-heart surgeries and five cardiac catheterizations to enlarge the stent in her heart as she has grown. Today, she is a happy girl who enjoys swimming, bike riding (especially at night during the pandemic to see the full moon), and singing in a chorus. She’s become very techsavvy, after many months of virtual learning during the pandemic. Although she faces more cardiac surgeries and procedures in the future, she is also still just your typical fifth grader.
Alycia and Ayva willingly share their story to raise awareness of congenital heart defects, which are the most common type of birth defect, impacting an estimated 40,000 infants each year in the United States.
“Expectant mothers and women who are considering pregnancy should be made aware that congenital heart defects can happen to anyone. It affects people of all races, ages, and socio-economic statuses,” notes Nicholas. Alycia’s advice for moms of heart warriors includes, “Have hope and be positive. Take care of yourself because you are integral to your child’s well-being and care. Learn to be an advocate and a voice for your child. Do research and ask questions. Get second opinions if you need to, so that you can make the best decisions for your child.”
A lesson that she’s tried to pass on to Ayva as she’s faced surgeries and other challenges in life is that, “It’s OK to feel scared; being scared doesn’t make you weak. You can be both brave and scared at the same time. You just need to find the courage to push through the fear, and when you come out on the other side and look back, you will be amazed at your strength and what you were able to get through and survive.”