Half a Heart and a Whole Lot of Spirit

If anyone deserves the title of warrior, it’s Shoham Das. Earning three black belts by the age of 16 would make anyone a warrior, but Shoham did it with a rare heart condition that left him with half a heart at birth. When asked if he thinks of himself as a warrior, he turns the title around and gives it to those who support him, including the pediatric cardiology team at Lucile Packard Children’s Hospital Stanford.

“It’s true that I don’t give up easily, but it’s my family, my coaches, and my doctors that are really the warriors. They drive me to stay active so I can be healthy and happy,” says Shoham.

Shoham is a sophomore at Valley Christian High School in San Jose, California. When he’s not practicing martial arts, he’s playing the violin or hanging out with friends talking, watching movies, playing games, and discussing which of the UC colleges they’ll apply to next year.

“With a heart condition, many sports are not viable, but martial arts is one I can do. It has really helped with my self-esteem and confidence,” Shoham says.

He gets exceptional grades and thinks he might be a doctor or medical researcher someday. This past summer, he attended an internship at the Stanford Anesthesia Summer Institute for high school kids.

“The Packard Children’s Hospital is the reason I am interested in medicine. The doctors work together to solve problems, and my doctor, David Rosenthal, MD, makes me feel very cared for and heard,” Shoham says. “If I become a doctor someday, I’d like to emulate him.”

Before the age of 4, Shoham had three open-heart surgeries at Packard Children’s Hospital. The first two prepared him for the grand finale—a Fontan procedure—a complex multistep reconstruction of his heart, intricately executed by cardiothoracic surgeons at Packard Children’s Hospital.

Without it, he was not expected to survive his complicated heart condition called DORV, or double outlet right ventricle—which occurs in approximately 1 in every 10,000 births in the United States. In DORV, the heart doesn’t form correctly in the womb, causing both arteries to attach to the right ventricle, with no arteries attached to the left. In other words, it’s one of the most complex forms of congenital heart disease, where only half the heart is formed. Yet survive Shoham did.

“Packard Children’s Hospital is among a handful of medical centers in the West that provide the comprehensive care that is necessary to perform the Fontan procedure and also the longitudinal care afterwards to manage possible complications,” says Dr. Rosenthal, director of the Pediatric Heart Failure program and Pediatric Advanced Cardiac Therapies (PACT). “We have a dedicated long-term Fontan care program for children born with DORV and other incredibly complex forms of heart disease.”

Shoham and his parents credit Packard Children’s Hospital for saving his life. His mother, Paromita, calls the hospital his second home and “perhaps even his first home.”

“By offering a full range of specialized cardiac care, we are here to care for Shoham no matter what he needs, now and in the future,” Dr. Rosenthal adds.

With even more to overcome, Shoham was diagnosed with protein-losing enteropathy (PLE) at age 7. It’s a rare complication of DORV whereby protein leaks into the gastrointestinal tract. The Packard Children’s Hospital team of doctors at the Betty Irene Moore Children’s Heart Center have been so successful at finding just the right combination of treatments to manage Shoham’s PLE that he’s going to the hospital less and less these days. His doctors are tapering down his treatments and envision a future when he can be off medications and injections. All this adds up to more time for Shoham to practice karate and tae kwon do, and simply be a teen.

“A lot of people dislike going to the hospital, but I enjoy spending time with my nurses and doctors. I’m not sure if that’s weird,” Shoham says. “I also enjoy the cafeteria. It’s silly, but I really like their croutons and saltine chips. It reminds me of visiting as a little kid.”

Shoham looks forward to a future of giving back—to thank all the warriors in his life. He dreams of working with patients to help them get to the other side of tough diagnoses.

“I’ve known Shoham since the day he was born. I’ve watched him grow through a variety of medical issues, and despite challenges, he retains a really positive outlook,” Dr. Rosenthal says. “He’s so easy to like and respect. He’s truly an inspiration for all children with congenital heart disease.”

Shoham has this advice for other kids with heart conditions: “Life can deal you a bad hand of cards and sometimes a good hand of cards. It’s best to work with what you have to improve your position,” he says. “It can be a long road, but with supportive people and good care, it will get better.”

To learn more about Shoham’s story, visit ktvu.com.