When Cierra and Avery Rice brought their newborn daughter, Amaya, home from the hospital, they had no reason to suspect anything was wrong with her heart. Cierra had a normal pregnancy, and the family had no indication that Amaya would be born with a congenital heart condition.
But when Amaya was about five days old, her parents noticed that she had stopped taking her bottle, was sweating and seemed unusually pale.
They sought medical care, and it quickly became clear that something was seriously wrong.
“Suddenly, like 10 people run into the room,” says Cierra. “We knew something was wrong. It was like a movie.”
Amaya and Cierra were taken by ambulance to Atrium Health Levine Children’s Hospital while Avery followed in the family’s vehicle. There, the family learned that Amaya had been born with a complex heart condition.
“Amaya was born with a large hole between the bottom chambers of the heart, a small aortic valve and a severe narrowing in a major artery, her aorta,” says Dr. Amanda Cook, pediatric cardiologist at Atrium Health Levine Children’s Hospital.
Finding reassurance in a frightening diagnosis
The diagnosis was frightening and completely unexpected. But Cierra says the confidence and reassurance of Amaya’s care team helped her and Avery begin to process what was happening.
“They told us, ‘We treat this every day and here’s the plan,’” she says. “For me and her dad, that gave us peace of mind.”
The Levine Children’s team carefully explained Amaya’s condition, what treatment she would need and what the family could expect in the months and years ahead.
“I was born and raised in Charlotte and had a lot of family, friends and coworkers reassure me how good Levine Children’s is,” says Cierra. “They had such a detailed care plan for her and made sure we were well-informed.”
“We were so uncertain and scared, but the doctors did an amazing job explaining everything to us,” says Avery. “At that moment, all we could do was pray.”
The team also recognized that Amaya’s diagnosis affected the entire family, including her older sister, Hayden. They helped explain what was happening in a way the 4-year-old could understand.
“Hayden saw my belly growing while I was pregnant, saw Amaya come home from the hospital after she was born and then she wasn’t at home and Mommy and Daddy were spending a lot of time at the hospital,” says Cierra. “They comforted my 4-year-old and helped her understand.”
Two heart surgeries during Amaya’s first year
Amaya underwent her first open-heart surgery when she was less than a week old. During the complex procedure, known as the Damus–Kaye–Stansel (DKS), her surgery team established reliable blood flow to her body.
The family learned that Amaya would need a series of heart surgeries as she grew. She underwent her second operation before her first birthday.
“Her second surgery was to close the hole between the bottom chambers of the heart and to provide a larger artery to the lungs,” says Cook. “She will need further pulmonary valve replacements as she grows.”
Amaya is expected to need another heart surgery when she is older, during her preteen or young adult years.
Support at home
Amaya’s care continued well beyond the hospital. When she first returned home, she was medically fragile. She had a feeding tube, needed regular injections to help prevent blood clots and took baby aspirin each day.
The Complex Congenital Heart At-Home Monitoring Program (CHAMP) provided nursing support as Amaya transitioned home. Cierra says that help made an enormous difference for the family, particularly as they balanced Amaya’s complex medical needs, and caring for her older sister.
Additional support came through The HEARTest Yard, which helped fund in-home nursing care based on Amaya’s clinical needs, ensuring the family had access to critical support as she recovered at home.
A home nurse, Isabelle, began caring for Amaya full-time Monday through Friday. She monitored Amaya’s vital signs and helped Cierra, Avery and Cierra’s mother manage her day-to-day care.
Over time, Isabelle became much more than a nurse to the Rice family.
“She even built a relationship with my oldest daughter,” says Cierra.
Amaya no longer requires full-time nursing care, but the family remains close with Isabelle and continues to stay in touch.
Looking ahead to Amaya’s future
“Amaya will have an excellent prognosis,” says Cook.
For Cierra, those words mean being able to imagine all the ordinary childhood experiences and milestones she wants for her daughter.
“I hope she’s able to live a regular life like anyone else,” says Cierra. “They said she can do sports. I want her to experience life and fall in love. I want her to feel secure in her body.”
The family remains grateful for the care they’ve received from the physicians, nurses and other team members at Levine Children’s.
“I love Levine Children’s,” says Cierra. “I appreciate their empathy, carefulness and communication. We’re grateful.”
Cook has enjoyed getting to know not only Amaya, but the family surrounding her.
“Amaya is a precious baby with a lovely family,” says Cook. “I enjoy watching her grow and develop. I also enjoy getting to know her family, including her parents, her grandmother and her big sister.”
Now 1, Amaya is independent and a little serious, her mom says, but she also loves to cuddle. After everything her daughter has already experienced, Cierra and Avery look forward to seeing the person she becomes.
“I’m so proud to see her getting bigger and growing into herself each day,” says Avery. “I know that no matter what she goes through, she will have a smile on her face.”
“She’s a tough baby,” Cierra says. “To go through what she’s gone through, it blows my mind sometimes. I look forward to what she’s going to teach all of us as she gets older.”
Learn more about pediatric cardiology and heart surgery at Levine Children’s.
