“Seeing him overcome every punch, punch, punch, it just got us stronger, stronger, stronger,” two-year-old Alexander Petrilli’s father, Michael, said.
HOUSTON — Two-year-old Alexander Petrilli spends his days playing with toys, laughing and smiling – even as he remains connected to life-sustaining medical equipment while waiting for a heart and double lung transplant at Texas Children’s Hospital.
Alexander and his family relocated from Florida to Houston after a medical emergency late last December, allowing him to receive specialized care as he awaits a donor match.
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Born with a complex form of congenital heart disease, including a complication involving high pressure in the lungs, Alexander has spent much of his young life in hospitals. His parents said they have watched him overcome one medical challenge after another, from procedures shortly after birth to emergency interventions and heart failure.
“He was hanging on by a thread,” Alexander’s mother, Kayla Petrilli, said. “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’s father, Michael Petrilli, recalled the frightening moments immediately after Alexander was born.
“We knew something was wrong and they rushed me and him up to NICU. And then, boom, I mean, they sent a helicopter, we’ll be there within 30 minutes, and I’m just like, ‘What is going on?’” Michael said.
Alexander underwent his first medical procedure at just four hours old and open-heart surgery at only six days old. Despite ongoing treatment in Florida, his condition worsened. Then, a medical emergency in late December changed everything.
“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 8 months later, we’re here,” Michael said.
The family has remained in Houston ever since.
At Texas Children’s Hospital, Alexander is receiving highly specialized treatment, including a heart pump that is helping stabilize his condition while he waits for a transplant.
Dr. Hari Tunuguntla, a heart failure and transplant cardiologist at Texas Children’s, is part of the team taking care of Alexander. She said very few hospitals in the country have the expertise needed to care for patients with Alexander’s complex condition.
“It really benefits patients like Alex to be able to come here and be treated with this type of experience,” Dr. Tunuguntla said.
While Alexander waits for a donor match for a new heart and new lungs, Dr. Tunuguntla said 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,” Dr. Tunuguntla said.
His parents said Alexander’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 said.
The Petrilli family, as well as the doctors taking care of Alexander, do not know how long the wait will be for a heart and lung donor.
But for now, they said they are focused on taking each day as it comes – and they hope other families facing similar struggles can find encouragement in Alexander’s story.
“It can be really hard, but there will be better days,” Kayla said.
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