Smith sisters in New York Times Magazine

Video: Meet the Smith sisters

The Smith sisters share most everything —a pink and purple princess room, a beagle named Charlie and even the same heart condition. Shayde, 9, and Emily, 7, were diagnosed with restrictive cardiomyopathy and placed on the heart transplant list at Children's Medical Center in April 2008. Emily received a new heart in January 2009, while Shayde still waits for hers.

On Sunday, June 21, the girls' story was shared across the nation in an advertisement in a special edition of The New York Times Magazine dedicated solely to pediatric health issues. The magazine was a part of The New York Times newspaper.

Rare diagnosis

Less than one in one million children are diagnosed with restrictive cardiomyopathy. For two in the same family to be struck with it is rare; for sisters to have it is almost unheard of. When Emily and Shayde's parents were told in March 2008 that their daughters share the disease, shock doesn't accurately describe the feelings that followed.

"It felt like getting hit with a baseball bat on one side and a cricket bat on the other," said Matt Smith, the girls' dad. "But once we got home and held the girls, their bravery became a source of inspiration for us."

With restrictive cardiomyopathy, the heart is stiff between each heartbeat, so it doesn't fill properly with blood. The Smith sisters have been at risk for blood clots or sudden cardiac arrest. The condition doesn't have a known cause. It seems to run in families, but it hasn't yet been proven to be genetic.

A heart transplant is the only option. Without a transplant, 75 percent of people with restrictive cardiomyopathy do not survive more than five years.

View photo gallery
of the sisters' journey

• Gallery Images

• Dr. Aliessa Barnes, pediatric cardiologist at Children's and assistant professor of Pediatrics at UT Southwestern, listens to Emily's heartbeat.
• Mandy Smith, Emily's grandmother, and Shayde Smith arrive at the hospital just in time to join Natalie Van Noy, Emily's mom, before surgery.
• Shayde Smith, Dr. Kristine Guleserian, surgical director of Pediatric Cardiac Transplantation at Children's, and Natalie Van Noy hold their heart necklaces.
• Dr. Kristine Guleserian, left, gets ready to implant a new heart in Emily Smith's chest.
• Dr. Damon Kennedy, fellow in Cardiothoracic Surgery, heads to the Operating Room with a chest containing Emily's new heart.
• Susan Daneman, RN, heart transplant coordinator at Children's, talks with Emily's dad, Matt Smith, as she updates the family during Emily's surgery.
• Dr. Kristine Guleserian checks on Emily moments after the transplant was finished. The bear and blanket at the end of the bed are Emily's favorites.
• Only three days after her transplant, Emily walks down the hall with Janice Wallace, her grandmother.
• Emily looks out the window on the Cardiology floor as Janice Wallace, Emily's grandmother, left, and Natalie Van Noy, Emily's mom, hold her hands.
• Emily hugs her mom before going home on Jan. 28, nine days after undergoing a heart transplant. She can't wait to play with Shayde and her beagle.
• Natalie Van Noy snaps a picture with Emily's camera. Emily is making a scrapbook of her journey.
• With their wagon packed, Emily and her mom make plans for their first dinner at home after her transplant.
• Shayde and Emily play with their miniature beagle. Emily visits Children's for follow-up appointments while Shayde waits for a new heart.
• Emily plays with Charlie outside of her home in Newark, Texas.
• On June 17, 2009, Shayde and Emily can't wait to cool off in the swimming pool.

A mother's instinct

When Shayde was diagnosed with a heart murmur, and Emily couldn't get over the flu and a fever, Natalie Van Noy, the girls' mom, suspected a deeper problem. She took Emily to a local Emergency Department where tests revealed an enlarged heart, and Van Noy put it all together. Soon, the girls' diagnosis was confirmed and, on April 3, 2008, both were listed for a heart transplant.

Replacing a broken heart

As time went on, both parents anxiously waited and prayed. The girls continued a normal routine at home, with the exception of soccer and cheerleading, for fear of overworking their already strained hearts.

On Jan. 19, more than nine months after being listed, Van Noy's pager signaled a heart was available for Emily. At 5 a.m., she rushed to "Grandy's" house where the girls were having a sleepover.

Three hours later, Emily was prepped and wheeled from the cardiovascular intensive care unit to the operating room. Emily clung tightly to Van Noy's hand as Shayde rounded the corner, just in time for the sendoff.

"I'm pretty excited for my little sister," Shayde said. "I wanted her to get the transplant first because she's worse than me. Her getting better makes me feel better."

Dr. Kristine Guleserian, surgical director of Pediatric Cardiac Transplantation at Children's, came down the hall with a silver heart dangling from her neck. Van Noy and her daughters also wear matching guardian angel heart necklaces, but Emily's recently broke.

"We're fixing Emily's broken heart with a real one today and we'll work on the necklace afterward," said Dr. Guleserian, who also is assistant professor of Cardiothoracic Surgery at UT Southwestern.

To date, the team at Children's has performed more than 120 heart transplants.

A new lease on life

Potential risks precede every surgery, but Emily's presented an added concern. Pressure had built up in the arteries that supply her lungs, leading to a severe case of pulmonary hypertension. When Dr. Guleserian took Emily's heart out, it measured double the size of a normal heart for a girl her age.

Nevertheless, the transplant continued without a hitch, and after five hours, a new heart beat perfectly in Emily's chest. Nine days later, Emily packed up and headed home.

"It was amazing because we all noticed an immediate difference in her appearance," Van Noy said. "Her lips are plump and red, and her body is so warm. Seeing Emily do so well gets us excited and gives us hope for Shayde's transplant."

Smith said the girls' bond is even stronger these days.

"Only the girls know and can relate to the struggles they face," Smith said. "Sometimes I'll peek in on them playing and hear their conversations about hearts and lately they've been talking about God."

Worth the wait

Both parents said they are left with overwhelming feelings of gratitude for the donor's family, who gave their youngest daughter life. But while a new life has begun for Emily, the waiting continues for Shayde.

"We can't wait for Shayde to get her heart," Van Noy said. "That's when we'll really feel like we can breathe again."

Read about other patients' experiences with heart conditions:

Camila Bojorquez
Shelby Hedgepeth
Audrey Nguyen
Logan Wallace

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Tags: Restrictive Cardiomyopathy , Heart Transplant , Cardiothoracic Surgery , Smith Sisters , Pulmonary Hypertension , New York Times Magazine