Heart of a Champion

Laughing with delight as she wriggles down a playground slide, rosy-cheeked Izabella Neira looks like any other first-grader letting off steam after a day of school.

But 6‑year-old Izabella is anything but ordinary. Inside her tiny chest, a new heart and lungs keep her alive — organs she received more than five years ago as one of the youngest patients in the United States to undergo a heart-lung transplant.

“She had to be resuscitated at least once a day, every day, until her transplant,” says her mother, Krystina Lopez Neira, remembering the first 417 days of her daughter’s life when Izabella lay sedated in a hospital crib, connected to a ventilator and fed through a tube.

“The team who kept her alive — they’re angels.”.

Those angels are the physicians, nurses and staff at the UF Health Congenital Heart Center, at UF Health Shands Children’s Hospital. Led by cardiothoracic surgeon Dr. Mark Bleiweis, the multidisciplinary team is dedicated to giving a second life to children battling extraordinary health crises.

“When Bella came to us, she was really the most critically ill child that you can imagine,” remembers Dr. Bleiweis. “Some days it was a minute-to-minute, hour-to-hour battle to keep her alive.”

To this day, Krystina has nightmares about the bells and alarms going off. “I still feel the times that weren’t so great,” she admits tearfully. “But in the end, we made it. She made it.”

Now, more than five years after her miraculous recovery, the curly-haired girl with pink glasses and an irrepressible grin is bringing a message of hope as a new “National Champion” for Children’s Miracle Network Hospitals.

“To see her running around today, you would never know that she had been in such a critical condition,” says Dr. Bleiweis. “That’s the reason I went into medicine — not to think coldly about procedures and anatomy, but to make an impact on people’s lives.

“Izabella shows what we can do for children and their families.”

A Nameless Disorder

Izabella’s battle for survival began Dec. 7, 2011, in Pembroke Pines, where she and her fraternal twin sister, Jesubelle (Jessi), were born three months premature. Weighing barely 3 pounds each, the twins weren’t expected to live, but Jessi soon rallied and joined her family at home.

Izabella, however, suffered a pulmonary hemorrhage and was placed on life support.

Izabella is looking forward to inspiring others as a new National Champion for the Children’s Miracle Network.

At four months, Izabella was diagnosed with a lung disorder so rare it has no name. “Surfactant deficiency caused by an ABCA3 mutation” is an inherited disease that prevents the lungs from inflating properly. With no drugs available to treat or cure the disease, Izabella would probably die before her first birthday, doctors told Krystina and her husband, Jesus Neira. The infant’s only hope for survival was a lung transplant.

The Neira family was quickly running out of time when their plight came to the attention of the specialists at UF Health Shands Children’s Hospital.

“Somehow UF Health heard about Izabella,” says Krystina. “They were like, ‘We have this hospital here in Florida. We’re going to give your daughter the chance she deserves.’”

Without even seeing Izabella, Dr. Bleiweis outlined his strategy: His team would perform a double heart-lung transplant to preserve the tandem functions of these two vital organs. The challenge would be keeping her alive until they found donor organs for an infant.

In May 2012, a UF Health ShandsCair flight team transported Izabella to Gainesville via a specialized emergency-care helicopter, with her family following behind.