Bay Area Kids with Irregular Heart Rhythms Get Their Lives Back Through Implantable Cardioverter Defibrillators at Stanford 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


STANFORD, Calif.–(BUSINESS WIRE)–Lucile Packard Children’s Hospital Stanford:

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

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 here.

* Read how our Children’s Heart Center outcomes surpass
peer hospital averages
despite tackling the most
complex cases in the U.S.

About Stanford Children’s Health and Lucile
Packard Children’s Hospital Stanford

Stanford Children’s Health, with Lucile Packard Children’s Hospital at
its core, is the largest Bay Area health care enterprise exclusively
dedicated to children and expectant mothers. Long recognized by U.S.
News & World Report
as one of America’s best, we are a leader in
world-class, nurturing care and extraordinary outcomes in every
pediatric and obstetric specialty, with care ranging from the routine to
rare, regardless of a family’s ability to pay. Together with our Stanford
Medicine
physicians, nurses, and staff, we can be accessed through
partnerships, collaborations, outreach, specialty clinics and primary
care practices at more than 60 locations in Northern California and 100
locations in the U.S. western region. As a non-profit, we are committed
to supporting our community – from caring for uninsured or underinsured
kids, homeless teens and pregnant moms, to helping re-establish school
nurse positions in local schools. Learn more at stanfordchildrens.org
and on our Healthier,
Happy Lives blog
. You can also discover how we are Building
the Hospital of the Future
. Join us on Facebook,
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LinkedIn
and YouTube.

Contacts

Lucile Packard Children’s Hospital Stanford
Robert Dicks,
650-497-8364
rdicks@stanfordchildrens.org