Teen’s battle to stay alive for transplant inspires family, friends, strangers

Andy Herrera Reyes mustered his strength and sat up in bed on Monday morning. That alone would not be considered a big moment in the life of a typical 13-year-old, but this simple act was a test of sheer willpower, and Andy is no typical teen.

Andy has been struggling with a heart disorder all his life. Over the years, he has been battling his own body, surviving numerous medical procedures, including three open-heart surgeries.

Several months ago, when doctors determined he needed a fourth operation, Andy and his parents had to travel outside their home in the Dominican Republic. Because of his three previous surgeries and the risk associated with this new procedure, the closest hospital that would take him was the Cayman Islands, just south of Cuba.

On Sept. 14, Andy underwent his fourth corrective heart procedure. The next day, his condition took a turn for the worse and he was placed on an extracorporeal membrane oxygenation machine, or ECMO, a life support device that puts oxygen into the blood and takes out carbon dioxide.

“ECMO was necessary in that Andy’s heart had failed and it wasn’t pumping enough blood, not into the lungs and not into the body. For him to survive, he had to be placed on ECMO,’’ said Michael Tsifansky, M.D., a pediatric pulmonologist and cardiac critical care physician, and medical director of the UF Health Pediatric Lung Transplant program.

ECMO is a last-ditch effort to keep a patient alive for a time while waiting for an organ transplant or some other lifesaving operation. The time a person can stay on the machine is limited, often just a few days or weeks.

Andy has been attached to ECMO for nearly four months, and medical personnel familiar with his case say he may be setting a record for time on the heart-lung bypass machine.

“This is the longest, most successful ECMO run that I know,” said Tsifansky. “ECMO is a great solution for some very bad problems but it's not a permanent solution. It's a very temporary solution. So it buys you time but not a whole lot of time.’’

The physicians in the Cayman Islands could do nothing more for him. That put him on a course to the UF Health Shands Children’s Hospital, where he arrived Jan. 27 after being airlifted. Andy carried with him the hopes of hundreds of well-wishers, including David “Big Papi’’ Ortiz, the former Boston Red Sox legend and fellow Dominican Republic native, who donated money to help cover his rising medical expenses.

Accompanied by a medical team from UF Health, Andy arrived Saturday evening in Gainesville and was whisked by ambulance to the hospital in a severely weakened state. On Tuesday, after recovering from his ordeal and still attached to the ECMO device, it was time for Andy to demonstrate that he would be physically able to support a new heart, if one could be found.

Summoning his courage, and with the help of the medical teams, he forced himself to sit up in his hospital bed, passing the test.

“It’s a miracle from God,” said his mother, Karen Reyes, who was there to witness his heroism. “Andy is very strong and, sometimes, I ask if he is human because he comes up with strength when he has none.’’

‘We have suffered a lot’

Karen Reyes and Sandy Herrera first noticed something unusual with their child when he was 2 months old. Andy was hospitalized for two months with pneumonia, and during that time, doctors detected a heart murmur. He had been born with an atrioventricular canal defect, or AV canal, a condition where there is a hole in the center of his heart. Over 13 years, he underwent surgeries to correct different conditions, including his AV canal and a mitral valve defect.

In October, after the surgery in the Cayman Islands, doctors told his parents Andy was left with no choice but to be transferred to UF Health Shands Children’s Hospital for a heart transplant.

“We have suffered a lot,” Karen Reyes said. “Andy went to the Cayman Islands very happy to have his surgery. To be so long in a bed, it has been so difficult for him. It just breaks your heart.”

A heart transplant in the United States would require well in excess of $1 million, with an initial deposit needed before transporting him overseas because of the severity of his medical condition and the nature of the treatment, which requires extensive medical services over an extended period of time. It was too much for the family’s modest finances.

“It was devastation because of the financial means that my family has and because of where we live,” Sandy Herrera said.

But Andy’s story traveled back to his home country and inspired many to help fundraise to cover his medical expenses. Multiple businesses, organizations and Latin celebrities, including Ortiz, helped to generate awareness of Andy’s condition and need for a new heart. The Dominican-American community in New York City and New Jersey has rallied to raise funds for Andy, including holding a telethon over the Christmas holiday season.

The efforts, including a GoFundMe page, have raised hundreds of thousands of dollars, but the family is still well short of the amount needed for the procedure. The family did reach the target of 60 percent of the necessary funds, and UF Health agreed to transport Andy to Gainesville.

On Saturday, Tsifansky — along with Michael McGuire, an ECMO specialist and respiratory therapist, and two flight crew nurses from ShandsCair — traveled by medical jet to get Andy. After arriving in the Cayman Islands, the UF Health medical team assessed Andy’s condition and moved him to new ECMO equipment. Hours later, Andy was in Gainesville, where he was admitted to the pediatric cardiac intensive care unit, or PCICU, the inpatient intensive care unit of the UF Health Congenital Heart Center.

It’s all been a whirlwind for his family.

“The road that we are taking only God has decided because he has taken us to many places where we didn’t even think we’d be able to get,” Sandy Herrera said. “We know that God is with our son. For him to withstand being on the machine for so long and to still have a smile on his face is something wonderful.”

Now, a waiting game

From now until transplant, Andy’s medical team of problem-solvers in the PCICU will work relentlessly to prepare him mentally and physically for transplantation.

“The principal teams are going to be the cardiology team, the heart transplant team and the cardiac ICU team, as well as the cardiac surgery team,’’ Tsifansky said. “Together we'll decide what's next for Andy and how to best get him to heart transplant and through heart transplant and eventually back home and thriving.

“The entire team at the UF Health Congenital Heart Center is monitoring Andy; we’re thinking about him literally all day every day. We’re plotting the course for his recovery,” he said. “Everyone is bringing something to the table, something that is unique to their specialty and their expertise. And altogether we hope that will get him to the transplant, through the transplant and eventually home safely and soundly.”

The family is grateful for the care they’re receiving at the hospital.

“They (the medical team) give themselves completely and they also want to be part of our family,” Sandy Herrera said. “They are all capable in many areas … having one person (nurse) for each room is very important because they can concentrate on each patient.”

Karen Reyes echoed that sentiment.

“Wow — they (the medical team) are spectacular,” she said.

The family has been staying at the Ronald McDonald House Charities of North Central Florida with their 17-year-old daughter and a family liaison. The family continues to see improvements with their son each day as he continues to wait for his new heart.

“He’s adapting, and he’s always been able to adapt,” Sandy Herrera said. “He’s a fighter and he’ll be able to accomplish this. He’s playing a lot and I see him acting normal like he has been here longer.”

Andy has already made tremendous strides, including some thanks to his physical therapy — he has been able to sit and now even stand.

“We have seen a good attitude. He is trying to overcome fear and he can do things on his own. Things he hadn’t done previously. That’s something extraordinary,” Karen Reyes said. “He wants to live. He wants to be an engineer. A baseball player.”

He also wants to establish a foundation to help children just like him.