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They’ve got heart – young patients treated to dinner and dance

Emily Stringfellow and Nicole Wilson, P.A., hold up the “Heart Kids Rock” poster during Emily’s recent doctor’s appointment.

Emily Stringfellow is a wide-smiled, gentle mannered girl who loves the color pink, Hello Kitty and The Little Mermaid. She is a savvy iPod Touch user and loves taking photos and listening to Katy Perry. Although she is only 4, Emily has gone through more in her short life than most people ever will.

Emily was born with hypoplastic left heart syndrome – a congenital heart defect that can be fatal at birth. Beating the odds, Emily underwent successful open-heart-surgery at 1 week old and a second surgery at 6 months old. Two months ago. Emily underwent a Fontan surgery at Sutter Medical Center, Sacramento – the third open heart surgery required for her condition.

Emily’s father, Stephen, her primary care taker since her birth, and her grandmother Angela LeBeau, have been by Emily’s side each step of the way. Though it’s been a roller coaster ride, Stephen said Emily has never been better than she is now.

“Before her surgery in December we would go to the park and she would take a few steps and be so tired, start coughing and her fingers and lips would turn blue,” Stephen said. “Now she has so much energy, and her lips are pink for the first time. We’ve seen such a difference.”

This Saturday, Emily, her father and grandmother will join dozens of other pediatric heart patients in the Sacramento region for the first annual Heart Kids Rock Valentine’s dinner and dance event, sponsored by the non-profit Angels for Hearts and Sutter Children’s Center, Sacramento. During their special daddy-daughter date, Emily and Stephen will have the opportunity to meet more than 75 other pediatric heart patients and their families, something Emily can’t wait to do.

“She’s really looking forward to this event,” Stephen said. “She has never been around too many kids with heart issues, so she wants to meet other kids like her.”

Nicole Wilson, P.A., pediatric heart surgery physician assistant at Sutter Medical Center, Sacramento, is helping organize the party and says Valentine’s Day can be a hard time for patients and parents as they remember their struggles and the fight against congenital heart disease. Nicole said the evening will celebrate National Heart Awareness Month, Congenital Heart Defect Week and the traditional Valentine’s Day by celebrating the heart kids and giving them an evening they will never forget.

“Radio Disney will be at the event, providing dance music and prizes,” Nicole said. “We will also have a photo booth, face painting, Valentine’s cards and blow up guitars to decorate. A delicious spaghetti feed dinner donated by Lucca Restaurant and cake provided by Icing Smiles. It will be a great night.”

In addition to heart patients and their families, many Sutter cardiologists and staff will also attend to see the kids they’ve helped treat. Emily and Stephen look forward to visiting with her surgeon, Teimour Nasirov, M.D., pediatric heart surgeon at Sutter Children’s Center, Sacramento.

“Dr. Nasirov is amazing,” Stephen said. “From my personal experience, it would be 11:30 p.m. or midnight and Dr. Nasirov would come in and check in on Emily while she was recovering. He goes the extra mile. It’s not just surgery for him, he treats the kids like they are his own.”

Doctors anticipate that if all goes well Emily’s next surgery – a heart transplant – won’t be needed until she is a teenager. They are optimistic that by then new advances in technology will provide Emily with other options.

“With so many ups and downs over the years, it felt like the wind was been knocked out of me and it was hard to breath,” Stephen said. “Now that things are getting better, it feels like I can finally breathe again and look forward to our future.”

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