Toddler awaiting heart and lung transplant shows what it means to be brave

HOUSTON (KHOU) - A 2-year-old boy is teaching others what it means to be brave as he awaits a heart and double-lung transplant at Texas Children’s Hospital.

Alexander Petrilli, 2, spends his days playing with toys, laughing and smiling – even as he remains connected to life-sustaining medical equipment. He was born with a complex form of congenital heart disease, including a complication involving high pressure in his lungs.

“He was hanging on by a thread,” said Alexander’s mother, Kayla Petrilli. “He’s been in and out of the hospital because he’s had heart failure this whole time, so any cold or any little bug he gets takes him down more than just a normal kid.”

Alexander has spent much of his young life in hospitals. His parents have watched him overcome one medical challenge after another from a procedure done at just 4 hours old to having open heart surgery at only 6 days old.

Last December, a major medical episode brought Alexander and his family from their Florida home to Texas Children’s Hospital in Houston.

“Giving him CPR at 4:45 in the morning and then, a medical jet from Texas coming in to pick me and him up. I’m in a duffle bag here, and now, eight months later, we’re here,” said Alexander’s father, Michael Petrilli.

The 2-year-old is now receiving highly specialized treatment, including a heart pump that is helping stabilize his condition, while he waits for a heart and double-lung transplant

Dr. Hari Tunuguntla, a heart failure and transplant cardiologist, is part of the team taking care of Alexander. She says very few hospitals in the United States have the expertise needed to care for patients like him.

“It really benefits patients like Alex to be able to come here and be treated with this type of experience,” Tunuguntla said. “His lung pressures have remained quite high, so he is now listed for both heart and lung transplant.”

While Alexander waits for a donor match for a new heart and lungs, Tunuguntla says he has had a positive attitude throughout his journey.

“It’s really a joy to treat Alex. He is one of the brightest kids, always smiling, always waving to the entire staff,” Tunuguntla said.

Alexander’s parents say their son’s resilience has helped keep the family moving forward.

“Seeing him overcome every punch, punch, punch, it just got us stronger, stronger, stronger because we see him fighting. We’re fighters. We’re going to fight right next to him,” Michael Petrilli said.

The Petrilli family, as well as the doctors taking care of Alexander, do not know how long the 2-year-old will have to wait for a heart and lung donor.

As they wait, the family has a message for others going through similar struggles.

“It can be really hard, but there will be better days,” Kayla Petrilli said.