Dilated Cardiomyopathy and Heart Failure: Naadir’s Story
Naadir, 13, was in heart failure in the spring of 2018. A ventricular assist device implanted at Children’s Hospital of Philadelphia, along with months of physical therapy, allowed him to build strength while he waited for a new heart.
On Oct. 10, Nadine got a call from Children’s Hospital of Philadelphia (CHOP) that she had been waiting months to receive. A new heart might be available for her son Naadir and transplant imminent. By the evening of Oct. 11, Naadir was in surgery.
“During the surgery I was very nervous,” says Nadine. “I had to keep an open mind that my son was going to be fine, that God has my child covered and guides the hands of the doctors and surgeons. I knew they would do a great job with my child.”
In a little under a year, Naadir had gone from being a typical 13-year-old boy to one with a puzzling array of symptoms that were first misdiagnosed before his family learned the shocking news that he was in heart failure.
A sudden diagnosis
Naadir is a quiet, chill kid. He’s a homebody. He loves to play video games and hang out with his brothers and sister. But in early 2018, his mother saw a change. “He was really tired, weak, and he didn’t want to eat or do anything,” explains Nadine.
The exhaustion Naadir felt grew worse. Nadine began to hear him wheeze at night and his breathing became labored. He looked pale. Doctors initially attributed to
Naadir’s symptoms to his asthma, but Nadine was skeptical. “You know your child,” she says. “Every mother knows their child.
After seeking a second opinion at CHOP, Naadir was diagnosed with dilated cardiomyopathy, a disease of the heart muscle that enlarges the heart and compromises its ability to pump blood effectively through the body. He was in heart failure.
Naadir was admitted the day he arrived at CHOP on April 27, 2018, and stayed at the hospital’s main campus for nine weeks. In May, he had a HeartMate III ventricular assist device implanted during an open-heart surgery performed by Christopher E. Mascio, MD, an attending surgeon in CHOP’s Heart Failure and Transplant Program.
A ventricular assist device (VAD) is a mechanical pump that supports heart function in weakened hearts and can provide a “bridge” to patients, like Naadir, who are waiting for a heart transplant. CHOP is one of the few hospitals in the country that offers a full range of VADs to support children from infancy to young adulthood.
Before Naadir was discharged from CHOP in June, Nadine underwent rigorous training on how to perform CPR, make sterile dressing changes, and manage the VAD and the medicines Naadir would take. The family was assigned a home nurse for support. Pediatric patients like Naadir must have 24-hour supervision with a trained adult while on a VAD.
Between the worry and stress of Naadir’s surgery and treatment, Nadine credits the staff at CHOP who supported her, helped her cope and helped her understand her son’s diagnosis and how best to care for him at home. “My family, friends and God also helped me cope with everything,” Nadine says.
Over the summer, Naadir came to CHOP as an outpatient twice a week to the Cardiovascular Exercise Physiology Laboratory, where Program Director Michael G. McBride, PhD, known as “Dr. Mike” by Naadir and other patients, worked with Naadir to stay active and build strength as he waited for a heart to become available for transplant.
A swift recovery
Naadir’s recovery from heart transplant surgery has been swift: He was discharged from the hospital a little more than two weeks after surgery. Nadine believes the VAD device and the time he spent as an outpatient over the summer helped him build the strength he needed to recover from transplant surgery.
As Naadir recovers, he must take strict precautions during the next several months to avoid cold and flu until his immune system grows stronger. He will take immune suppression medications to prevent rejection of his new heart for the rest of his life. He’ll also continue to manage his care with frequent check ups at CHOP’s Cardiac Center.
Nadine is struck by the quality of her son’s care and the support CHOP has offered to her family. “CHOP staff doctors and nurses are all amazing,” says Nadine. “They make you feel like family. They really care about your children.”
As for Naadir, he’s looking forward to home-cooked meals with his siblings, playing his favorite video games, and watching the Golden State Warriors play. But most of all, he’s looking forward to going back to just being a regular teen.