Moving Mountains
All Andy needed was a chance, and a miracle.
he boy’s heart was dying. And no one could save it.
Karen Reyes said a prayer as she sat beside her son, Andy Herrera, a few weeks after his heart surgery. Her boisterous 12-year-old with the outsized personality unsettled her in his stillness.
“Andy, Mommy’s with you,” Karen said to her sedated son. “Mommy will not leave you. Even if you don’t feel me, if you don’t hear me, I am here with you.”
Andy’s family had gone to the Cayman Islands, south of Cuba, in September 2017 for surgery to fix a congenital heart defect, treatment unavailable in their native Dominican Republic.
The operation seemed a success, but the next day, doctors could not coax his heart into a steady, independent rhythm. He was sinking and desperately needed a lifeboat. Surgeons rushed to give him one called ECMO.
Connected to the vessels of Andy’s heart, the device took over the organ’s functions. Doctors thought the heart would strengthen after a few days. It didn’t. Andy needed a heart transplant.
So began a journey that would bring Andy, Karen and her husband, Sandy Herrera, to University of Florida Health. At UF Health Shands Children’s Hospital, Andy’s case would touch dozens of dedicated caregivers, from nurses to ECMO specialists to doctors and therapists. In Andy, they faced one of the biggest challenges they would ever encounter.
“Andy was one of the most critically ill kids we’d ever seen,” said Mark Bleiweis, M.D., director of the UF Health Congenital Heart Center.
Andy would ride that lifeboat beyond the point of what his doctors thought possible. But the best medical care could only give Andy a fighting chance at survival. Doctors said Andy’s heart had failed him.
Now, he would have to prove it was actually his biggest asset.
Don't Leave Me
Problems with Andy’s heart began when he was just 3 months old.
He became sick with pneumonia and was hospitalized for a month. Doctors heard a heart murmur in Andy’s chest, which led them to discover Andy was born with an atrioventricular canal defect, a hole in the heart that affects its four chambers.
Andy would have three surgeries. The hole in his heart was repaired, but his family said that the operation left his mitral valve narrowed and it too later needed a surgical fix. It had been repaired surgically. But after Andy’s 12th birthday, he began feeling exhausted all the time. The valve was again failing and he would need another operation.
The fourth surgery to rebuild it would be risky. A hospital in the Cayman Islands was one of the few willing to take on the risk, but when Andy’s heart started to fail, and he was connected to ECMO, he was nearly out of chances. Andy needed a new heart and the hospital didn’t perform transplants.
At one point, Andy went into heart failure and doctors used a defibrillator to coax the organ back to life. His parents prayed for their boy.
“Andy. Please. Please. Don’t leave me,” Karen cried. “Please don’t leave me. My God, don’t take him. Just give him one more chance. Lord, help me please.”
Within a few hours, Andy stabilized.
He was on a type of life support called VA-ECMO, or veno-arterial extracorporeal membrane oxygenation. ECMO carried dire risks of complications that multiplied with time.
Most often, VA-ECMO was used for a few days, oxygenating blood and removing carbon dioxide. In extreme cases, some patients survived two or three months as ECMO became a bridge to transplant.
ECMO was the gift of life. But it could be a dangerous friend.
Fundraising
The race was on to find a hospital willing to take on the challenge of giving Andy a heart transplant.
Gisela Bolivar, an interpreter at the Grand Cayman hospital, befriended the family and sent applications to numerous facilities. Soon, UF Health accepted Andy.
But first, the Herreras began fundraising to pay for Andy’s surgery and transport to Florida. A transplant in the U.S. could exceed $1 million given Andy’s condition.
The parents started a social media campaign and Sandy traveled back to the Dominican Republic. The first lady of the Dominican Republic donated, as did the nation’s central bank. Karen’s boss at a water utility helped the family. News media in the Dominican Republic and elsewhere began covering Andy’s case.
“Every news station and every program that opened their door, I would go,” Sandy said.
The family received an international boost when a social media star known as Killadamente took up Andy’s case. A Dominican with millions of followers, she publicized the family’s fundraising efforts throughout the Spanish-speaking world.
A GoFundMe page collected donations from 28 countries. Former Boston Red Sox slugger David “Big Papi’’ Ortiz, a Dominican native, donated $50,000.
Former baseball star David “Big Papi” Ortiz takes to Twitter to help Andy’s family raise money for his heart surgery.
Andy Herrera on Instagram
The family raised nearly $800,000, meeting the goal of a 60% deposit on his care. Andy was coming to the Sunshine State.
Andy had been on ECMO more than four months when he arrived at UF Health, and sicker than doctors realized. His chest wound was healing poorly, and his extended time on ECMO had left him malnourished and frail.
Worse, doctors learned within weeks of his arrival that it wasn’t just Andy’s heart that ailed him. After his long illness, Andy’s kidneys were damaged, a frequent complication of ECMO. Within weeks, doctors realized he needed a kidney transplant, too.
His doctors knew it would take months to get Andy strong enough for a transplant.
It was going to be difficult for everyone,’’ Bleiweis said. “It was going to be difficult for Andy. It was going to be difficult for his parents. It was going to be difficult for every nurse and doctor who took care of him. And for all the therapists and ancillary specialties. It was just going to require everybody collectively to be onboard.”
Doctors had some concerns about Andy’s ability to even survive to transplant.
“Seeing what we were dealing with at that time,’’ said Joseph Philip, M.D., medical director of the UF Health pediatric cardiac ICU, “there was a part of me wondering what we had gotten ourselves into.”
Isolation
In the close-knit Dominican Republic neighborhood where the Herreras live, everyone knows everyone. “It’s fun because your neighbors are your friends,” said Sandy.
“You know who lives on top of you, next to you.”
Now, they were in a country where they didn’t speak the language. It wasn’t that anyone was unfriendly, but the language barrier isolated the family.
“It’s difficult to be away from home,” Sandy said. “But we supported each other.”
The family had help from bilingual nurses in the pediatric cardiac ICU to whom they were especially close, including Leandra Combass, R.N., a nurse in the pediatric cardiac ICU; Daniela Sanchez, R.N.; and Circe Laucerica, ARNP.
The parents would confide in them. At times, the family just had to vent.
“I don’t have anyone to talk to,” Karen told Sanchez at one point. “We need somebody to talk to and to let out all the frustrations.”
A rotating team of ECMO specialists who worked by Andy’s bedside provided friendship. One of those specialists, Donnie Harrington, would form an especially close bond with Andy and his parents.
One day, Andy flew a small remote-controlled drone around his room, as Harrington danced with his arms going this way and that to keep it from hitting the ECMO equipment.
The family gave Harrington a nickname: tio loco, loco tio.
Uncle crazy, crazy uncle.
Part of their bond was music. Andy loves music and would prowl YouTube for artists he liked. Michael Jackson is a favorite. Harrington brought in his guitar to entertain Andy. He saw that his guitar could improve Andy’s mood.
Harrington decided to learn a Spanish-language song for Andy, “Lo Harás Otra Vez,” or “Do It Again,” about God’s ability to perform miracles. “I’ve seen You move mountains … And I believe, I’ll see You do it again.”
It took weeks for Harrington to teach himself the song. He’d listen to it with headphones on the weekend as he mowed his yard. He finally was ready to unveil it.
Andy and his family loved it. At one point, Andy met Harrington’s eyes, pointed at him and started bobbing his head.
For a moment, Andy was transported out of the hospital.
Tenacious infection
The biggest mountain needing to be moved was a fungal infection that held a tenacious hold on Andy’s body, including his bladder and blood. It could end hopes of a transplant.
“Even if you put in a new heart, the infection would consume it,” Philip explained.
Doctors rotated antifungal medications to find the right combination. Andy received bladder washes to eliminate fungus in his urinary tract.
A heart transplant is about more than the patient receiving the organ. Someone has died to give this gift. And when one person is chosen to receive the heart, someone else who also needs it loses out. At what point is a patient’s chance of survival so marginal that it would be a disservice to those other two lives to proceed?
“There are three lives we have to take into consideration when a heart transplant is done,” said Philip.
Frederick Fricker. M.D., the director of the pediatric heart transplant program and a pediatric cardiologist, consulted with several medical experts about Andy’s case.
“I told them, ‘Kid on ECMO. In renal failure. And fungus. What chance do we have?’ They told me, ‘No chance. Zero.’ They all told me, ‘You’re doing futile care.’”
Doctors, Philip said, asked themselves, “Are we doing the right thing?”
The physicians met with Andy’s parents and said they questioned whether their son was a viable transplant candidate. What followed for Sandy and Karen was their lowest point at UF Health. Sandy started crying.
“What does Andy need to do to be a transplant candidate?” he asked through an interpreter.
The parents urged the doctors to keep trying to beat the fungal infection. Just give him more time. “They said, ‘Even though the road is bleak, it still exists,’” said Philip.
Sandy and Karen said Andy had already overcome so much. His spirit and drive to fight were strong. The boy would never give up. The mood in the room began to shift.
“It was really one of the great moments with a family that we have had,’’ Bleiweis said. “It was pretty incredible to hear him really speak to Andy’s strength and character and what he had been through and what we had all been through with Andy.
“And Sandy convinced me there was no way we could let Andy die without a transplant,” he continued. “His argument was just so compelling that I left there (with) no doubt that we were going to have to get Andy a heart. And all of us left there knowing we would have to keep going.”
Tricycle joy
A critical part of Andy’s care was the physical and occupational therapy he received every day. Andy had been confined to a bed for months in the Cayman Islands, and had lost weight and muscle mass. His limbs were tight and limited in their range of motion.
A rotation of therapists joined the battle to get Andy moving. It wasn’t always easy. Andy would get feisty, resistant to the therapy. He was, after all, a teenager.
His parents would push him to work harder. They would remind him of all his supporters, people like David “Big Papi’’ Ortiz. “And I think that was what made him really strong,’’ Combass said. “He did not want to let people down.”
Andy’s team alternated hard exercises with fun activities. He used a plastic bat to hit a ball while he sat on his bed. They brought a miniature basketball net into his room. He kicked a soccer ball in the hall.
Occupational therapist Jessica Pickler said she and others on the therapy team at times had to apply some tough love to get Andy to exercise. She said Andy would sometimes give her a terrible time during a session. But then, as she walked out of the room, he blew her kisses.
There was a red tricycle used in physical therapy for many kids on the unit, but the fragile ECMO lines hanging from Andy’s chest made riding it too risky.
Andy rides the big red tricycle as part of his rehabilitation before his surgery.
Andy had his eye on the tricycle for a while. “I always liked to ride a bike but never could,’’ he said. His care team knew he desperately wanted to give it a spin. They also knew he was getting discouraged with the long wait for a new heart.
Harrington, physical therapist Jessica Cornman, D.P.T., and Desiree Machado, M.D., a pediatric cardiac critical care specialist, worked together to see if they could make it happen with proper precautions.
“At that point, he had been on ECMO so long, we felt like we had to do something fun for this kid,” Cornman said.
Cornman rode the trike into Andy’s room. Andy would get to ride. It was a complete surprise. The boy flashed a smile.
“We never saw him so happy,” Cornman said, “as when he was on that trike.”
A marathon
Everyone knew the clock was still ticking. Five months on ECMO became six and then seven and eight. Doctors searched the medical literature and could find no instance of anyone surviving on VA-ECMO for so long.
“On VA-ECMO, it’s unheard of,” said Machado.
Sandy and Karen coped with the stress as best they could. Andy was starting to eat solid food, which was a positive sign. Sandy, a cook by trade, brought his son home-cooked meals. Pasta. Rice. Beans. Fried plantains.
“There were days after days, very difficult days,” said Karen. “People would ask us, ‘How can you endure this?’”
Their answer always came back to two things. Their faith. And their love for Andy.
In small steps, Andy began to get better. His wound was healing properly. Physicians were finally seeing progress with the fungal infection.
Soon, Andy’s blood cultures were coming back negative. The infection still lurked in his body, but it was suppressed enough to allow the transplant.
“The human body is made so well that, if you give it the right tools, it will over time take care of itself,” said Philip.
Andy wanted a new heart by his 14th birthday on Oct. 27. Then, he dreamed a man at the hospital told him his heart would arrive on Aug. 24, just weeks away. But in the dream, Andy replied, “But they won’t be able to transplant it.’’
“When God sends you a signal, he doesn’t always tell you how he is going to send it,” Sandy said.
On Aug. 22, two days before the date in the dream — a heart became available. The family was amazed. Nurses and doctors and other caregivers dropped by to congratulate Andy.
“Everyone was so happy,” said Johanda Rodriguez, a UF Health medical interpreter working that day. “You could see it in their eyes. People kissed Andy. Hugs. Everyone was crying. I was crying.”
But unexpectedly, the heart did not come through. Andy reminded his mother of the dream, telling her, “I knew this one wasn’t for me.”
Much later, Andy would mark this day as his saddest in the hospital. But he told Bleiweis, “That’s OK. There’s a reason.”
In September 2018, Andy’s family and a few caregivers and volunteers marked a bittersweet day — the one-year anniversary of Andy’s connection to ECMO. There was joy in the day because Andy was alive and looking better. Volunteers from Streetlight, a support program for older pediatric patients at UF Health, gave him a trophy. Andy was delighted.
Andy gets a trophy on the one-year anniversary of his being put on ECMO.
A second heart
Good news came soon enough. On Oct. 13, 2018, Andy would have a new heart. This time, there would be no awful dream.
“I cried because I was so excited,” Andy said. “I was so happy, like never before. And I also told my mom not to be sad because everything was going to be all right.”
Machado came in on an off day to support the family. They hugged and held hands. The doctor told the parents, “I believe in miracles.”
Right before Andy was taken into surgery, he looked into his mother’s eyes. He told her, “Everything is going to be OK. Don’t worry, mommy.”
It wasn’t just God in whom Andy and his family placed great faith. Andy called Bleiweis his second father.
“There are doctors who are really blessed by God,” said Sandy. “Everyone is good. But there are angels on the Earth. For us, in this hospital, an angel from God is Dr. Bleiweis.”
Bleiweis leads a heart-transplant program with a national and international reputation. He is known for getting emotionally attached to his patients. And Andy is no exception.
An unusual feeling swept over Bleiweis before Andy’s transplant: Nervousness.
Bleiweis, who has performed thousands of cardiac surgeries, rarely gets nervous before an operation. He prepares himself mentally, putting his mind in a good place.
Going in, he knew Andy’s would be a long and challenging surgery.
“There were a lot of things going through my mind,” Bleiweis said. “It was going to be a difficult operation. I knew it would be long. I knew the scar tissue in his chest would be daunting given that he had had many operations. And he had these (ECMO) tubes in place coming out of his chest for a long time. It was over a year.”
Andy’s history of bleeding and infection were worrisome.
“It was a little nerve-racking,” Bleiweis said. But “we were just completely committed to Andy. We just love Andy. Andy and his parents were part of our family. It was like operating on a family member. So, it was quite daunting.”
Bleiweis said it took a long time to connect Andy to a heart-lung bypass machine that would allow the operation to proceed. Then there was scar tissue that was like cement.
Andy’s mom, Karen Reyes, speaks to her son right before he is taken into surgery for his transplant.
Karen and Sandy sat in the waiting room as the hours passed. By midnight, Karen was getting frantic. Sandy told her to be calm. If the doctor hasn’t come out, he said, then everything is good.
“But it’s been too long,” she said.
Finally, they saw ECMO specialist Andrew Jaudon walk out of surgery. What he told them seemed so surreal. Andy was disconnected from ECMO for the first time in a year and 29 days.
The surgery went on for 22 hours, the longest one in Bleiweis’ career. He told the parents Andy had done well, but he still faced a long recovery.
The next day, surgeons were forced to abandon kidney transplant surgery, in part because ECMO had left Andy with an inflamed liver, making the operation too risky.
Birthday song
Hard months of recovery followed. Andy struggled to regain strength. His new heart took a long time to get stronger.
“The most-stressful time for us was after the transplant,” Sandy said. “We felt like we would never get out of the hospital. The days kept on getting longer and longer.”
Andy’s spirits rose with his body’s improvement. In early March, he sang for his mother on her birthday. He still had a tracheostomy, which had made it difficult to for him to speak in a strong voice. But he managed to sing with gusto. It brought Karen to tears.
“It was a dream,” she said. “It was just something impossible, unimaginable.”
The day arrived when Andy left the pediatric cardiac ICU, where he had lived for more than a year. Staff threw him a party with a cake.
Andy was doing well. He went to a regular unit where he was able to walk to a play area where he could interact with other children.
One day, Bleiweis strolled by the play area, took a glance inside and did a double-take.
“There was Andy with a cap on, playing pool with a couple of other kids,” he said. “And I thought, ‘This is absolutely phenomenal. Here’s a kid who came here on VA-ECMO, malnourished, debilitated, can’t get out of bed, can’t breathe. And he looks like a normal kid playing pool.’ It was like a jolt. It was a happy jolt. But a jolt.
“And I think it put in perspective what we had done at that point. We had given him a chance at doing normal kid stuff and being a real kid.”
Saying goodbye
The day finally arrived, the day that had seemed so distant, so impossible.
Discharge.
Karen and Sandy loaded Andy’s belongings into bags. They wore wristbands that said, “Andy — Miracle of God.” Andy, looking tired but excited, wore a Boston Red Sox hat.
Nurses and doctors and other caregivers had been stopping by throughout the day to say their goodbyes.
Home would be an apartment in Gainesville so that Andy could receive dialysis and continuing follow-up at UF Health. The family wouldn’t be going home to the Dominican Republic just yet.
And Andy still needs to get stronger for a kidney transplant. He has battles to fight, but he has overcome so much.
“All of this was possible because God wanted it to be possible,” Sandy said. “Andy overcame so many things that we don’t have any other explanation for.”
As they packed, Sandy told Karen, “He wants to go upstairs to say goodbye.”
Andy was put in a wheelchair and taken up to the 10th floor pediatric cardiac ICU, where he had spent so much time. As his parents wheeled Andy into the unit, nurses and ECMO specialists and other staff broke into applause and cheers.
They said their goodbyes in a hail of hugs and fist bumps. The kid made it.
Andy and part of his UF Health care team.
‘True miracle’
Andy recognizes the gift he has been given.
The boy who likes a practical joke and is good at math and wants to be a civil engineer when he grows up — if his dreams of being a pro baseball player fall through — did what many thought impossible: He survived.
“I just think that it was God who sent that” heart, Andy said. “And I believe that God gave it to me so that I could take care of it and would protect it as if it were the life of that other human being. That human being now is not really dead because he’s living inside of me.”
Andy thanked all his UF Health caregivers. Just this month, near the one-year anniversary of Andy’s transplant, his family again visited the unit in the UF Health Shands Children’s Hospital that had watched over him so closely.
“I’m really grateful for all the love that they showed when they were taking care of me,” Andy said. “They really took care of me and they showed a lot of love.”
Karen Reyes and Sandy Herrera said they are grateful for everyone and all the teams at UF Health who played a part in her son’s care: nurses, ECMO specialists, respiratory therapists, interpreters, volunteers, transplant staff, nephrology, infectious disease, the wound care team and others.
Mark Bleiweis, M.D., who Andy's father called "an angel from God," says goodbye to Andy before the youngster is discharged.
“We’re thankful for the support, love and dedication of the entire medical staff and all the people who were with us living one day at a time,” she said. “We thank them all immensely. Andy’s home. He’s really happy. It’s been a long road. But we’re still fighting. We’ve got to get that kidney.”
His doctors still marvel at Andy’s more than a year on ECMO. His time on ECMO, his doctors agree, will be a case study for other health professionals.
“Andy represents in so many ways why we do what we do here at UF Health,” Bleiweis said. “We take on whatever is given to us. We take on challenges. And we focus on the children and their families. That’s why we are what we are.”
“Andy,” he said, “is a true miracle.”
Or as Cornman, the physical therapist, puts it, “He’s the one-in-a-gazillion kid.”
***
The kid left the hospital exhausted after all the goodbyes. But that first night out, he insisted that his parents take him someplace he hadn’t been in three years.
Andy went out to the movies.
To name a few
Andy’s story involved dozens of people. Unfortunately, no one story can name them all nor describe all of their contributions.
Many UF Health caregivers were interviewed for this article but are not identified in the text. They include Biagio “Bill” Pietra, M.D., associate director of the UF Health Congenital Heart Center; pediatric cardiologist Dipankar Gupta, M.D.; pediatric cardiologist Renata Shih, M.D.; nurse manager Josh Campbell, B.S.N, R.N.; ECMO coordinator Tim Bantle, R.R.T.; and ECMO specialist Michael McGuire, R.R.T. The family also wishes to thank everyone at the UF Health Congenital Heart Center for all of their tireless efforts to help Andy.
UF Health medical interpreters played a critical role in assisting Andy’s family in their day-to-day communication with caregivers. Those interpreters not named in the story are Raquel Bourget-Gras, Jessica Yupanqui and Charisa Lakin.
Andy’s parents are especially thankful to doctors in the Cayman Islands, whom they credit with saving their son’s life. They include cardiac surgeons Binoy Chattuparambil and Sumit Modi.
The family also was greatly assisted by Laurie Braun at Gift of Life NJ, a New Jersey nonprofit organization.
For more information, please contact Bill Levesque at william.levesque@ufl.edu or 352-273-6160.
