One day when she was walking to her car after work, Disha’s heart started racing. Another time, it happened when she was driving. It happened when she was dancing at a friend’s wedding. It happened again and again.
Disha, who was born with a rare heart defect called double outlet right ventricle, experienced these life-threatening cardiac arrhythmias (irregular heart rhythms) for many years. She’s had many cardiac procedures — including six open heart surgeries and a catheter ablation — and has a pacemaker and an implantable cardiac defibrillator (ICD), a device that detects and corrects irregular heart rhythms.
Today, at 35, Disha is able to lead a normal life — thanks to the support she receives from her family and her medical team at Children’s Hospital of Philadelphia (CHOP) and the Philadelphia Adult Congenital Heart Center.
Growing up with congenital heart disease
More About Arrhythmias
When Disha was growing up, the fact that she had a serious heart condition didn’t bother her much. “It was just part of my life — I didn’t know any different,” she says. She saw her cardiologist for regular checkups, and although she couldn’t participate in sports or gym class, she was able to do all the things she enjoyed, like hanging out with her friends and taking dance classes.
In 2010, Disha learned that she needed a valve replacement, and her doctor referred her to Jonathan J. Rome, MD, FACC, an interventional cardiologist at CHOP’s Cardiac Center who was leading research on an innovative device called the Melody™ valve. While traditional valve replacements require open heart surgery, the Melody valve is implanted using a minimally invasive catheterization procedure, so patients typically have shorter recovery times and hospitalizations. The procedure was completed in CHOP's Cardiac Catheterization Laboratory.
The procedure went well, but that night Disha woke up in her hospital room, her heart racing, surrounded by doctors and nurses. She had developed a life-threatening arrhythmia, and though it was successfully treated, the experience was terrifying. “I was a mess,” Disha says. “I’ve always had anxiety — and after that, it was heightened.”
Transitioning to adult-centered care
After Disha received the Melody valve, Maully J. Shah, MBBS, FACC, FHRS, CCDS, CEPS, a pediatric electrophysiologist who performed her catheter ablation and oversees her care at CHOP, suggested that she add an adult cardiologist to her healthcare team. She referred Disha to Yuli Y. Kim, MD, Medical Director of the Philadelphia Adult Congenital Heart Center. Clinicians at the center work closely with the CHOP team to help patients transition from pediatric to adult care, and have special expertise caring for adults with congenital heart disease.
In 2014, a few years after she began seeing Dr. Kim, Disha experienced another frightening episode of tachycardia (fast heart rhythm) and was admitted to CHOP, where she learned she would need to have open heart surgery because she had developed a blockage in her Melody valve. During the surgery, cardiothoracic surgeon Stephanie Fuller, MD, removed the Melody valve and replaced Disha’s right ventricle to pulmonary artery (RV-PA) conduit, which supplies blood flow to her lungs. She also performed the Maze procedure, which involves creating scar tissue in the upper chambers of the heart to disrupt the abnormal electrical signals that cause arrhythmias. Dr. Fuller worked closely with Dr. Kim and Dr. Shah to coordinate Disha’s care and make her hospital stay as stress-free as possible.
Disha says the emotional support she receives from her medical team has helped her cope with the anxiety she often feels before medical procedures. “They understand my personality and take that into consideration with my care,” she says. “That’s why I love CHOP. One nurse even taught me how to do weaving to keep my mind busy!”
Disha’s medical team was also incredibly supportive when she told them she wanted to start a family with her husband, Ankur. Because pregnancy was considered very high risk for Disha, Dr. Kim discussed several other options with the couple — and in 2017, their first son, Ronak, was born via gestational carrier. Their second son, Hiren, was born in June 2019.
Ongoing care from a compassionate team
Today, Disha works as a preschool teacher in Montclair, NJ, and sees Dr. Kim every six months.
“Dr. Kim and Dr. Shah are amazing and so patient,” she adds. “They listen to me and don’t ignore my concerns — no matter how small or silly they are. That’s helped me a lot.”