Zayne McCall was blue when he was born. Before his mother could hold him, doctors rushed him away for tests.
At first they thought one of his lungs had collapsed. Further tests showed Zayne was born with heart defects – six of them.
These included abnormal pulmonary venous return, a rare defect in which oxygen-rich blood returns to the right side of the heart instead of the left side. Zayne also had a complete atrioventricular canal defect, or a hole in the center of his heart, and pulmonary atresia, where the valve that controls blood flow from the heart to the lungs fails to form.
Hospital staff encouraged his parents, Debbie Perkins-McCall and Joey McCall, to call family members to meet Zayne immediately. They feared he would not survive the night. Meanwhile, staff spent hours on the phone trying to find a specialist hospital to help Zayne.
He was airlifted from Lubbock, Texas to a facility in Fort Worth that could stabilize his heart. At 24 hours, Zayne underwent his first open-heart surgery. Doctors inserted a shunt to help more blood flow to his lungs. The operation was a success.
Shortly after, Zayne was diagnosed with heterotaxis syndrome, a condition in which certain organs in the body form abnormally, if at all. Zayne’s intestines were tied into a ball at birth. He was also born without a spleen or gallbladder.
At eight months, Zayne and his parents returned to Fort Worth for a second open-heart surgery followed by a third surgery at 18 months.
In the years that followed, Zayne tired easily when he ran or played, and he couldn’t play team sports like other kids. At school, he thought his teachers were hyper-aware of his every move during recess and physical education.
He knew it was out of concern for his health and well-being, “but I felt like a sight to behold,” said Zayne, now 22. “It comes with mental health issues, and that’s something I have a very, very lot of struggle with now.”
The therapy helped. Swimming too.
In middle school, Zayne’s mother enrolled him in a community swim club. She thought it might satisfy the desire for competition that he had had since a young age. Additionally, Zayne said, “I’ve loved being in the water for as long as I can remember.”
The night before tryouts, Zayne spent hours on his living room floor practicing competitive shots. He made the team, but his stamina held him back at first. He gradually progressed until he could complete an entire practice.
“Unlike other sports, with swimming I was able to catch up with kids my age,” he said. “Swimming was one of the few places where I felt like the conditions and the difficulties I had didn’t really matter.”
As a teenager, Zayne had respiratory problems. The medicine didn’t help. A lung biopsy led to a diagnosis of primary ciliary dyskinesia, a rare disorder where the cilia, or hair-like structures in the lungs that move debris out of the airways, are not properly formed.
Over the years, Zayne has also managed other health issues, including hypothyroidism. In high school, doctors discovered a benign brain tumor. His doctor recently mentioned early signs of liver damage.
Two years ago, Zayne felt extreme fatigue. During a stress test on a treadmill, doctors discovered that her heart rate was not increasing as it should. “I was at a full sprint and didn’t hit anywhere over 90 beats per minute,” he said. Doctors implanted a pacemaker. Normally it goes in a patient’s chest, but because of his scar tissue, Zayne put the device in his abdomen.
Throughout these challenges, Zayne’s parents have been by his side. Debbie found comfort in the poem “Welcome to Holland”, about having a disabled child.
“It takes you a bit of time to see the beauty of where you are,” she said. “But I wouldn’t change it for a minute.” To parents of children with heart defects, Debbie said, “Never give up.
Zayne is currently a student at Texas Tech University, majoring in psychology and minoring in women’s studies. He also joined the university’s competitive swimming club. He goes ahead with his passions and his projects.
After graduation, Zayne, who identifies as non-binary demisexual, hopes to earn her master’s degree in psychology at the University of California, Los Angeles. He wants to be a sex therapist for people who identify with alternative sexualities.
“The next big milestone for me is finishing school so I can start doing the job I want to do,” he said. “What I’m struggling with is time. What’s my life expectancy? It’s a huge question mark. I’m like, ‘What can I do today? What can I do now to get where I want to be? It’s about taking the next step forward.”
Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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