She may be just 3 years old, but Alyvia Parker is already making a difference for other kids with congenital heart defects (CHD).
This month, she was a guest of honor at Gulfport City Hall, where, thanks to her and her mom’s advocacy, their hometown lawmakers proclaimed it Congenital Heart Defect Awareness Week. The two also convinced the governor of Mississippi to make the same proclamation for the entire state.
Alyvia has always had an outgoing nature; her ability to charm politicians isn’t all that surprising. But until recently, a heart condition had made her tire easily. So when her parents, Krysta and Che, now see her moving around with endless energy, they know they’re finally on the brighter side of a journey that had left them searching for answers about CHD treatment.
One surgery wasn’t enough
Only 12 hours after Alyvia was born, she turned blue and was airlifted to a pediatric hospital. There, she was diagnosed with tricuspid atresia, a rare CHD in which a child is born without the valve that controls blood from the right-upper chamber to the right-lower chamber. Tricuspid atresia is part of a larger series of CHDs known as hypoplastic right heart syndrome, where the right ventricle is too small to properly function.
At that hospital, Alyvia had a surgery known as the Glenn procedure. It directed blood from her upper body straight to her lungs so that her only functional ventricle could pump blood throughout her entire body. The procedure stabilized Alyvia, who was then 3 months old. But as she grew older, she would often feel tired and out of breath, and her oxygen levels declined. Her local doctors said she needed another surgery.
Where they needed to be
After learning how the pediatric hospital and several others would treat Alyvia’s condition, Krysta sought a second opinion from Boston Children’s Complex Biventricular Repair Program — a team of cardiovascular specialists who convert a child’s single-ventricle circulation into a heart with two pumping ventricles. Given Alyvia’s condition, the program’s doctors felt that she should undergo a Fontan procedure, a surgery for those who can’t have a biventricular repair.
The other hospitals would have performed the same Fontan operation, Krysta says, but they wanted Alyvia to wait until after she turned 3, when she had grown enough to handle the procedure. But Krysta and Che believed she needed surgery sooner to prevent her health from worsening. Dr. Eric Feins, a cardiac surgeon in Boston Children’s program, recognized Alyvia could have surgery before turning 3 if it was necessary. That possibility and the relationship Krysta developed with Dr. Feins convinced her “that’s the place we need to be,” she recalls. “He just took his time to talk to me, instead of just treating us like another number.”
In August, Alyvia and her parents came to Boston Children’s for her surgery, three months before her third birthday. Dr. Feins and the surgical team adjusted her heart anatomy, ensuring the left ventricle now pumps blood only with high oxygen to her body. “I’m really glad about it,” Krysta says. “She really needed that surgery before she turned 3.”
Sing-alongs and CHD advocacy
Alyvia had a few complications that are common for heart surgery patients, but throughout her hospital stay, her care team made the family feel at home. Isaac, one of her nurses, even surprised Alyvia with a tiny flower, a gift her family appreciated considering that he wasn’t working on her floor that day.
Many children thrive with one functioning ventricle. Alyvia demonstrates that every day, her mom says. In fact, almost immediately after surgery, a newly energized Alyvia pushed a toy car down the hallways of Boston Children’s, ready to travel distances in oversized pink bunny slippers.
Now home, Alyvia enjoys attending preschool. Aside from socializing, she loves singing with Krysta. “She’s goofy,” mom says. “She’s just very silly.”
With life feeling normal, the family has shifted its focus. After leaning on other parents for advice when Alyvia was first diagnosed, Krysta now has time to return the favor. Her advocacy for CHD care is what led her and Alyvia to push for an awareness week in Mississippi, just in time for National Heart Month. Krysta couldn’t wait to share the news with Dr. Feins.
Learn more about the Complex Biventricular Repair Program or schedule a second opinion about your child’s cardiac diagnosis.
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