Bay Area Kids With Irregular Heart Rhythms Get Their Lives Back Through Implantable Cardioverter Defibrillators at Stanford Medicine Children’s Health

* “We didn’t even know ICDs could be put into children,” said Aimee Sol, mom of 17-year-old William Sol-Garcia.
* Annual event for ICD patients is this Saturday (19) on the Stanford campus

For Release: March 16, 2016

Event
ICD Connecting Day
Saturday, March 19, 9am-4pm
Frances C. Arrillaga Alumni Center
326 Galvez Street, Stanford, CA (map)

STANFORD, Calif. — When William Sol-Garcia steps into the boxing ring, he is just like any other 17-year-old boy who loves the sport. And, he prefers it that way.

William is described as a “natural athlete” by his mom, Aimee Sol. But behind the scenes there’s something that makes his boxing and athleticism a more extraordinary feat: the implantable cardioverter defibrillator he received through the Heart Center at Lucile Packard Children’s Hospital Stanford and Stanford Children’s Health.

In the beginning

William was born with tetralogy of Fallot, a deadly condition that combines four defects of the heart: a hole in the wall separating the heart’s two main pumping chambers, a narrowing of the pulmonic valve, a thickened right heart chamber wall and a misplaced or expanded aorta.

At only 6 days old, William underwent his first open heart surgery to repair the hole in his heart. Since then, he has had four more open heart surgeries, with his first pulmonic valve replacement at age 2. The surgeries kept him out of sports for months at a time, but he never let that stop him.

“I may be limited, but there are kids who are more limited. I think I should take advantage of what I can do,” William said.

Then, at age 10, William started waking up at night feeling dizzy. His concerned mother took him to his pediatric cardiologist, who referred him to the Heart Center at Packard Children’s. After testing, it was determined William was a candidate for the implantable cardioverter defibrillator. At 11, he had the ICD procedure.

“We weren’t expecting it,” Aimee said. “We didn’t even know ICDs could be put into children.”

An ICD is an electronic device in the chest that monitors the heart’s electrical activity and shocks the heart back into a normal rhythm when an irregular rhythm occurs. For William and other patients with a high risk of having a life-threatening cardiac arrhythmia from congenital heart disease or inherited heart disease, getting an ICD can help prevent the heart’s electrical system from malfunctioning, thereby preventing sudden cardiac death.

“Strain on the heart muscle can lead to sudden death,” said Anne Dubin, MD, director of the service and professor of pediatrics in the division of pediatric cardiology at the Stanford University School of Medicine.

“It was really scary at first,” William said. “But my care team was honest and open. They pretty much took my hand and told me how it was going to play out.”

A program with young hearts in mind

William, a high school junior from Santa Clara, California, is one of 75 patients the team follows. The group consists of Dubin; Scott Ceresnak, MD; Kara Motonaga, MD; nurse practitioners Debra Hanisch and Tony Trela; and Lauren Schneider, PsyD.

The team implants ICDs into an average of 15 patients annually. The process begins with explaining what an ICD is and why one is needed.

“I start at a basic level,” Dubin said. “I tell them what an ICD does and I address what worries them. Like, ‘Will it leave a scar?’ and ‘Will the ICD take over what I think?’

We told William that the ICD was like a belt and suspenders for his heart. In case he has an abnormal heart rate, it will be there to shock his heart and bring it back to a normal rhythm.”

Treating the whole patient through family-centered care

The process involves surgery, follow-up appointments to check the ICD every three to six months, and varying restrictions on physical activity, including staying away from magnets and not playing contact sports — both harmful to the device.

The ICD procedure and life afterward can be nerve-wracking for parents, too.

“When your child needs an ICD, you have 100 questions running through your mind,” mom, Aimee, said. “Dr. Dubin explained it was like an insurance policy. The one day William may need it, it will be there for him.”

It’s this type of family-centered care and communication that makes the difference. “Dr. Dubin and her team turned a scary situation into something that we can now say is not so bad,” Aimee said.

Dubin, Schneider and the team also offer an annual, daylong ICD Connecting event at Stanford. This year’s event is on Saturday, March 19, and will enable families and children facing the same challenges to get to know each other. It also gives patients an opportunity to form bonds with their care providers in a more casual setting.

Another way the team treats the whole patient is by investing in the psychological well-being of their young patients. Many children with ICDs are afraid of the pain they could feel from the device shocking their hearts, which has been described as feeling like being “kicked in the chest by a mule.”

“The psychological impact can be huge. That’s why we developed a psychology program,” Dubin said. The program, led by Schneider, helps kids and their families face any adjustment issues related to having an ICD — from fear of inappropriate shocks to coming up with alternatives when certain types of workouts are restricted.

“Our main goal is to help kids get back to their lives,” Schneider added. “This requires that we treat the whole patient and focus not just on their physical, but also their mental health needs."  

The Future

These days, William is spending a great deal of his time on cardio and strength training along with developing his boxing skills.

“The object in front of you is never as powerful as the willpower behind you,” William said. “The doctors originally said I probably couldn’t play sports or even have P.E. again. “

"William has made incredible strides,” said Dubin. “After his diagnosis, he went from someone who understandably was fearful and depressed to a confident young man who is a role model for children facing the same challenges. Our entire team is proud of William. He has shown us, and our other patients, that no matter what limitations you may face, there are ways of overcoming them and flourishing."

* Find out more about our electrophysiology and arrhythmia services.

Authors

Melissa Schenkman, MPH, MSJ

Robert Dicks
(650) 497-8364
rdicks@stanfordchildrens.org