Edgar Arredondo has lived with a ventricular assist device for longer than any other patient being treated at Lucile Packard Children’s Hospital Stanford.
July 8, 2016 - By Melissa Schenkman
When people meet Edgar Arredondo, 22, of Newark, California, they are immediately drawn to his easygoing nature, his positive outlook on life and his unfailing smile. An aspiring graphic designer who has battled Becker muscular dystrophy since elementary school, Arredondo prefers pursuits that allow him to take things at his own pace, tackling them the same way he has taken on the rest of life’s challenges — all in stride.
It’s an approach that continues to captivate his family, friends and the care team at Lucile Packard Children’s Hospital Stanford Heart Center as he marks an extraordinary five years of living with a ventricular assist device attached to his heart. The device was implanted at Packard Children’s in 2011. “What jumps out at me about Edgar is that he is able to maintain enthusiasm, positivity and grace, all at once, in the face of a series of medical challenges,” said David Rosenthal, MD, director of the hospital’s VAD program and professor of pediatrics at the School of Medicine.
Arredondo’s personal milestone is also a record for the VAD program: He has been living on a VAD longer than any other pediatric recipient in the hospital’s history, and possibly in the country. To mark this milestone, Arredondo and his family gathered recently in the hospital’s courtyard along with dozens of people from his care team, past and present, including members who were on their day off and those who have retired but who wanted to return for the momentous occasion.
“Edgar, you have been an inspiration to all who have cared for you,” said Daniel Bernstein, MD, the Alfred Woodley and Mabel Salter Endowed Professor in Pediatrics, who has been closely involved in Arredondo’s care over the years.
Arredondo wore an ear-to-ear grin as he read aloud from a letter to his supporters, expressing his heartfelt gratitude to all who have helped him along his journey.
How it all began
Around age 6, a completely mobile Arredondo noticed that he felt tired when walking long distances and fell more often than his classmates.
“It was hard to keep up with the other kids,” he said. “When I used to go up the stairs or curbs, it was really hard. Those muscles weren’t as strong, I guess, so I couldn’t do those things.”
Arredondo’s difficulty with movement was not just on his own radar. His mom and his teachers noticed, too.
Becoming a patient at Stanford was a new opportunity for Edgar to have life.
At 9 years old, he had a muscle biopsy. He was diagnosed with Becker muscular dystrophy, a genetic disease that causes muscle breakdown and weakness. It typically affects muscles in the thighs, hips, shoulders and pelvic area.
Arredondo got around mostly by walking until he entered junior high, when he opted to use a wheelchair to navigate the campus. Other than that, the condition did not faze him. School was going well and he had a loyal group of friends. “They would include me in everything, even if I couldn’t do anything,” he said.
When he was a high school freshman, Arredondo’s dystrophy began to show its unpredictable side. He felt very weak, had little appetite and often couldn’t keep his food down.
After a series of tests, it was determined that the disease was affecting a very important muscle: his heart.
“With muscular dystrophy, you get a dilated cardiomyopathy, a weakness of the heart muscle that is in direct parallel to the skeletal muscle,” Rosenthal said.
Arredondo was referred by Children’s Hospital Oakland to Lucile Packard Children’s Hospital Stanford, the only pediatric heart transplant center in Northern California.
It’s a referral his family is very grateful for.
“Becoming a patient at Stanford was a new opportunity for Edgar to have life,” said Imelda Arredondo, Edgar’s mother. “The doctors and nurses love their work. They worry not just about the patient, but the family, too. No matter your background they treat you good.”
Ventricular assist device program
Mending poorly working hearts is nothing new for Packard Children’s. For years, the program has been using medications and VADs to keep children’s hearts functioning while they await a transplant.
Historically, life with a VAD has meant staying inside the hospital. Rosenthal and his team pioneered the use of durable VADs in kids, building the foundation for a treatment program that includes living at home and going to a mainstream school. The result for many patients is a higher quality of life.
“In 2010, we started using a VAD called the HeartMate 2, which is totally implanted in the body and has wires on the outside that are easier to care for,” nurse practitioner Aileen Lin, RN, said. “Most places weren’t trying this in kids yet. At the time, it was a huge push in the field.”
It takes a lot of manpower to get these kids back to being kids, which is one of the main goals of pediatric VAD support.
In Arredondo’s case, the pressure in his lungs was too high to allow for an immediate heart transplant, so the care team decided that a VAD would allow the lungs to recover and the pressure to fall so that he could undergo a heart transplant in the future.
In addition to providing medical care, a significant part of the VAD program is dedicated to educating patients and their families about the device, setting patients on a path to outpatient life.
“We train parents and siblings how to be ‘VAD active’,” Lin said. “We teach them how to change the batteries and when to call the hospital. We also inform the emergency medical service providers in the community where the patient lives to make them aware.”
When they were in high school together, Arredondo’s sister Viviana would help him change his batteries every day at lunchtime.
“We learned to make the VAD a part of our lives. Sometimes when our mom is not home at night, I help Edgar get in bed and connect him to his home monitoring system,” Viviana said.
The program also addresses patients’ concerns about issues such as body image, being reliant on a machine and getting treated differently. This support makes patients and their families feel confident about living life outside the hospital.
“Our hospital community is very motivated to be involved in the care of these patients. It takes a lot of manpower to get these kids back to being kids, which is one of the main goals of pediatric VAD support,” said nurse practitioner Jenna Murray, RN, a ventricular assist device coordinator.
On the horizon
In Rosenthal’s view, the VAD program is just one example of Packard Children’s commitment to the field of transplantation — and to pushing the envelope in pediatric VAD research.
Some exciting developments are on the horizon. First is a national trial for a new kind of pediatric VAD, spearheaded by Christopher Almond, MD, assistant professor of pediatric cardiology. There are also plans to organize a national trial of the Berlin Heart, one of the first VADs, to look at alternative ways to provide care that will reduce the risk of stroke for patients.
“We have had a longstanding interest in how to use VADs in children, and we want to carry that into the future, as well,” said Rosenthal.
As for Arredondo, he has made a lasting impression on the hearts of his health-care team.
This is especially true for Lin, who has taken care of him from the beginning and even attended his high school graduation.
“I feel incredibly lucky to know someone like Edgar and to be a part of his care,” Lin said. “It’s amazing to see him endure all of these things and take it all in stride. He hasn’t missed a step.”
About Stanford Medicine
Stanford Medicine is an integrated academic health system comprising the Stanford School of Medicine and adult and pediatric health care delivery systems. Together, they harness the full potential of biomedicine through collaborative research, education and clinical care for patients. For more information, please visit med.stanford.edu.