PreviousHenaʻi received a lifesaving procedure and specialized care at Stanford Children’s after being diagnosed with tetralogy of Fallot
At 3 years old, Henaʻi is happiest outside—riding her bike and four-wheeler, searching the yard for bugs and lizards, or spending the day at the beach. Outgoing and curious, she has a special way of making friends wherever she goes.
Her adventurous spirit reflects the bravery she has shown since before she was born.
Henaʻi’s heart journey began when concerns identified through routine prenatal bloodwork led her mother, Leʻa Alcover, to a maternal-fetal medicine specialist. At 18 weeks pregnant, she flew with her family from Hilo to Honolulu for an ultrasound. Because Henaʻi’s position made it difficult to see her heart clearly, the family returned several weeks later and learned that she had tetralogy of Fallot, a congenital heart defect that affects blood flow through the heart and to the lungs.
An urgent journey to specialized care
At 26 weeks pregnant, Leʻa experienced what the family believed was a placental abruption and was medically evacuated to Kapiʻolani Medical Center for Women & Children, a Stanford Medicine Children’s Health partner hospital in Hawaiʻi. She remained hospitalized for a week while her care team worked to stabilize her bleeding and performed a detailed fetal echocardiogram to better understand Henaʻi’s condition.
“That was the moment everything became very real,” Leʻa recalled. “We were told that if I delivered at that gestational age, Henaʻi might not survive.”
The family was advised to transfer their care to Stanford Medicine Children’s Health, where Henaʻi could receive highly specialized treatment before and after birth. Erica Wu, MD, oversaw Leʻa’s obstetric and maternal-fetal medicine care at Lucile Packard Children’s Hospital Stanford in Palo Alto, California.
After several days of labor, Henaʻi was delivered by cesarean section when Leʻa developed a fever and Henaʻi’s heart rate became elevated. Although Henaʻi appeared much like any other newborn, her medical team watched her closely. About a week later, she began experiencing episodes in which the oxygen level in her blood dropped, indicating that she needed heart surgery sooner than initially planned.
Trusting Henaʻi’s heart to Dr. Michael Ma
From the family’s first meeting with Michael Ma, MD, cardiothoracic surgeon and chief of pediatric heart surgery at Betty Irene Moore Children’s Heart Center at Stanford Medicine Children’s Health, they felt reassured.
“He was incredibly confident in his ability to care for Henaʻi. Dr. Ma’s confidence came from his knowledge, experience, and genuine care for his patients,” Leʻa said.
Before choosing Dr. Ma, the family had read about his care of another child with an especially complex heart condition. He had spent countless hours studying the child’s anatomy and created a three-dimensional digital model to evaluate surgical options for the best possible outcome.
“That level of dedication spoke volumes to us,” Leʻa said.
For children whose tetralogy of Fallot (TOF) is accompanied by major aortopulmonary collateral arteries (MAPCAs), Stanford Children’s offers care through its internationally recognized Pulmonary Artery Reconstruction (PAR) Program. Henaʻi’s diagnosis was different: Although she had TOF, she did not have MAPCAs, so her team developed a care plan tailored to her specific heart anatomy.
During Henaʻi’s operation, Dr. Ma performed a full repair using a transannular patch. The family understood that this approach could help delay another open-heart operation until Henaʻi is an adolescent or adult—an outcome they considered an extraordinary gift.
Her mother will never forget the moment Dr. Ma entered the room after the procedure.
“He simply said, ‘Her surgery went beautifully, and we were able to do a full repair,’” Leʻa recalled. “I was overwhelmed with emotion. He gave us reassurance, hope, and a future we weren’t sure we would have.”
Recovering one milestone at a time
Henaʻi’s recovery included challenges, but she continued to make steady progress.
Once her immediate cardiac needs were addressed—from preoperative care through surgery and recovery in the Cardiovascular Intensive Care Unit—feeding became the family’s next focus. Learning to consistently take a bottle and gain weight became another important milestone—and another opportunity for Hena‘i to demonstrate her determination. A multidisciplinary team supported her throughout this stage, including occupational therapy, physical therapy, and Nutrition Services specialists.
“She worked so hard every step of the way,” Le‘a said.
Throughout Henaʻi’s hospitalization, her family was struck not only by the expertise of her care teams, but also by the compassion each person brought to the experience.
“They are among the most skilled professionals in the world at what they do, yet we never once felt like we were just another patient or another surgery on the schedule,” Le‘a said.
Doctors, nurses, and support staff answered the family’s questions, explained complex information in understandable ways, and made them feel like essential members of Henaʻi’s care team. The family remains especially grateful to the neonatal intensive care team, including Ritu Chitkara, MD, and to the many nurses and staff members who provided comfort during some of their most vulnerable days.
“We always knew Henaʻi was deeply cared for,” Leʻa said. “It was clear that everyone shared the same goal: to provide her with the very best care possible.”
Today, Henaʻi is thriving—social, adventurous, and brave. While her heart condition will remain part of her story, so will the care and support that helped shape it.
“Henaʻi’s journey has shown us how resilient children can be and how much hope can exist even in the hardest moments,” her mother said. “As parents, you never forget the people who gave your child a chance at life.”
Learn more about child heart care at Stanford Children’s >
Authors
- Ada Preda
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