The heart of the matter: Family rallies around girl with congenital illness


Three-year-old Hina Lindsey has always been an active little girl.

When playing with her three sisters — Kamau, 7, Naheana, 11, and Raena, 13 — Hina is in charge, says her mother, Raenelle Rosete.

“She likes to be the boss of everything,” Rosete said with a chuckle. “I think it’s because she’s the baby. She wants to tell everyone what to do. … And they do whatever she says. Her sisters will do anything to keep her quiet.”

When she’s not directing activities, Hina likes to jump on the trampoline and ride horses. Around the time she turned 3, she even taught herself to swim, her proud mom said.

But lately, Hina has slowed down a bit.

“She been real tired,” Rosete said. “She’s taking some medication so her heart doesn’t have to work as hard.”

When the little girl was born, doctors noted a heart murmur, but at the time they weren’t terribly concerned because many babies grow out of a murmur without any problems.

Hina, unfortunately, wasn’t one of those kids.

“In October, we took her for her 3-year-old checkup, and the pediatrician heard it again,” Rosete said.

In a phone interview Monday, Dr. Brenda Camacho explained Hina suffers from a “congenital cleft of the mitral valve” of her heart, giving rise to a condition known as “mitral regurgitation.” Essentially, a flap over her heart valve did not develop as it should have as she grew, and now blood is able to leak out of the girl’s heart and into her lungs.

If the leak is not fixed, Hina faces up to a 55 percent chance of heart failure in the future, Rosete said. The only solution is open heart surgery, and that’s a very complicated procedure on such a small child, requiring doctors with very specialized training.

“When I first found out, I really had a breakdown,” Rosete admitted. “Normally, I can cope with a lot of stuff. You think this is something that can’t happen to your family. I’m scared, I’m worried. I don’t want to deal with it, but you have to.”

Next month, the family plans to travel to Kapiolani Medical Center on Oahu to take part in a special program the hospital has had since 1995 called Heart Week. The program allows medical staff at the hospital to team up with specialists from the mainland to offer life-saving procedures that ordinarily couldn’t be performed in state.

“As a result of the program, many families have been spared the added stress and anxiety of traveling to the mainland for open-heart surgery,” according to Dr. Carlos Moreno, director of Kapiolani’s Pediatric Cardiac Program.

While Heart Week will make the experience easier on Hina and her family, Rosete said that it will still be a hardship for all of them. Rosete and other family members, including Hina’s father, Casey Lindsey, will have to take time off from work to travel to Honolulu, while paying for lodging and other expenses.

In an effort to help the family, friends organized a pair of fundraisers. This Saturday, from 8 a.m.-3 p.m., there will be a car wash at Bayfront Motors, charging $5 for cars and $8 for trucks.

Meanwhile, E Komo Mai Lounge, located at 340 Kuawa St., plans a special concert to benefit the girl. The show is set for 6 p.m.-1 a.m. Aug. 23 and will feature numerous local acts including Josh Tatofi, Loeka Longakit, Positive Motion, Bubba B, and more.

“We were contacted through my cousin, Konrad Kaipo, who told us the story about Hina, and it just touched our hearts,” said Jalyn Like, owner of E Komo Mai. “We knew we had to do something to help our community.”

In addition to the two upcoming fundraising events, Hina’s family also set up a website with information about her condition, and a link allowing people to donate money to help the family defray the costs associated with her surgery. For more information, visit www.hinasheart.org/.

Email Colin M. Stewart at cstewart@hawaiitribune-herald.com.

 

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