From Hawaiʻi to Stanford Children’s: Henaʻi’s Journey to a Brighter Future

Henaʻi acquired a lifesaving process and specialised care at Stanford Youngsters’s after being recognized with tetralogy of Fallot

At 3 years outdated, Henaʻi is happiest exterior—driving her bike and four-wheeler, looking the yard for bugs and lizards, or spending the day on the seaside. Outgoing and curious, she has a particular approach of creating pals wherever she goes.

Her adventurous spirit displays the bravery she has proven since earlier than she was born.

Henaʻi’s coronary heart journey started when considerations recognized by means of routine prenatal bloodwork led her mom, Leʻa Alcover, to a maternal-fetal drugs specialist. At 18 weeks pregnant, she flew together with her household from Hilo to Honolulu for an ultrasound. As a result of Henaʻi’s place made it troublesome to see her coronary heart clearly, the household returned a number of weeks later and discovered that she had tetralogy of Fallot, a congenital coronary heart defect that impacts blood move by means of the center and to the lungs.

An pressing journey to specialised care

At 26 weeks pregnant, Leʻa skilled what the household believed was a placental abruption and was medically evacuated to Kapiʻolani Medical Center for Women & Children, a Stanford Medicine Children’s Health companion hospital in Hawaiʻi. She remained hospitalized for per week whereas her care staff labored to stabilize her bleeding and carried out an in depth fetal echocardiogram to raised perceive Henaʻi’s situation.

“That was the second all the pieces turned very actual,” Leʻa recalled. “We have been advised that if I delivered at that gestational age, Henaʻi may not survive.”

The household was suggested to switch their care to Stanford Drugs Youngsters’s Well being, the place Henaʻi may obtain extremely specialised therapy earlier than and after start. Erica Wu, MD, oversaw Leʻa’s obstetric and maternal-fetal drugs care at Lucile Packard Youngsters’s Hospital Stanford in Palo Alto, California.

After a number of days of labor, Henaʻi was delivered by cesarean part when Leʻa developed a fever and Henaʻi’s coronary heart fee turned elevated. Though Henaʻi appeared very like another new child, her medical staff watched her intently. A couple of week later, she started experiencing episodes by which the oxygen stage in her blood dropped, indicating that she wanted heart surgery prior to initially deliberate.

Trusting Henaʻi’s coronary heart to Dr. Michael Ma

From the household’s first assembly with Michael Ma, MD, cardiothoracic surgeon and chief of pediatric coronary heart surgical procedure at Betty Irene Moore Children’s Heart Center at Stanford Drugs Youngsters’s Well being, they felt reassured.

“He was extremely assured in his skill to take care of Henaʻi. Dr. Ma’s confidence got here from his information, expertise, and real take care of his sufferers,” Leʻa stated.

Earlier than selecting Dr. Ma, the household had examine his care of one other little one with an particularly advanced coronary heart situation. He had spent numerous hours finding out the kid’s anatomy and created a three-dimensional digital model to evaluate surgical options for the very best final result.

“That stage of dedication spoke volumes to us,” Leʻa stated.

For kids whose tetralogy of Fallot (TOF) is accompanied by major aortopulmonary collateral arteries (MAPCAs), Stanford Youngsters’s gives care by means of its internationally acknowledged Pulmonary Artery Reconstruction (PAR) Program. Henaʻi’s prognosis was totally different: Though she had TOF, she didn’t have MAPCAs, so her staff developed a care plan tailor-made to her particular coronary heart anatomy.

Throughout Henaʻi’s operation, Dr. Ma carried out a full restore utilizing a transannular patch. The household understood that this strategy may assist delay one other open-heart operation till Henaʻi is an adolescent or grownup—an final result they thought of a unprecedented reward.

Her mom will always remember the second Dr. Ma entered the room after the process.

“He merely stated, ‘Her surgical procedure went superbly, and we have been in a position to do a full restore,’” Leʻa recalled. “I used to be overwhelmed with emotion. He gave us reassurance, hope, and a future we weren’t positive we’d have.”

Recovering one milestone at a time

Henaʻi’s restoration included challenges, however she continued to make regular progress.

As soon as her rapid cardiac wants have been addressed—from preoperative care by means of surgical procedure and restoration within the Cardiovascular Intensive Care Unit—feeding turned the household’s subsequent focus. Studying to constantly take a bottle and acquire weight turned one other necessary milestone—and one other alternative for Hena‘i to display her dedication. A multidisciplinary staff supported her all through this stage, together with occupational remedy, bodily remedy, and Diet Providers specialists.

“She labored so onerous each step of the best way,” Le‘a stated.

All through Henaʻi’s hospitalization, her household was struck not solely by the experience of her care groups, but additionally by the compassion every individual dropped at the expertise.

“They’re among the many most expert professionals on this planet at what they do, but we by no means as soon as felt like we have been simply one other affected person or one other surgical procedure on the schedule,” Le‘a stated.

Medical doctors, nurses, and assist employees answered the household’s questions, defined advanced info in comprehensible methods, and made them really feel like important members of Henaʻi’s care staff. The household stays particularly grateful to the neonatal intensive care staff, together with Ritu Chitkara, MD, and to the numerous nurses and employees members who offered consolation throughout a few of their most susceptible days.

“We at all times knew Henaʻi was deeply cared for,” Leʻa stated. “It was clear that everybody shared the identical objective: to offer her with the easiest care doable.”

At present, Henaʻi is prospering—social, adventurous, and courageous. Whereas her coronary heart situation will stay a part of her story, so will the care and assist that helped form it.

“Henaʻi’s journey has proven us how resilient youngsters may be and the way a lot hope can exist even within the hardest moments,” her mom stated. “As mother and father, you always remember the individuals who gave your little one an opportunity at life.”

Learn more about child heart care at Stanford Children’s >