0128-SFTH-Nadia LuQman_Blog

Nadia LuQman’s parents were ready to take her home from the hospital shortly after her birth when doctors discovered a telltale sign of a serious problem.

Newborn Nadia had a heart murmur. Further tests revealed Tetralogy of Fallot, a heart defect involving four specific problems, including holes in the wall separating her heart chambers and a narrowed valve blocking some blood flow from her heart to her lungs.

Once she got to go home she was continuously on a machine to measure the oxygen level in her blood while she awaited surgery.

Nadia LuQman (left) with her mother Jo and sister Yasmin.

Nadia LuQman (left) with her mother Jo and sister Yasmin.

“My mom cared for me. They never left me – ever,” said Nadia, now 17, who also had two older siblings who needed their parents’ attention. “It must have been a really scary time.”

At two and a half months old, in 1998, she had surgery to close the holes in her heart and to remove her non-functioning pulmonary valve. It was a brand new surgery, and, fortunately it went well.

Her family moved from Las Vegas to Seattle, and for several years Nadia had regular heart checkups. She had a balloon angioplasty at age 7 to open a narrowed heart artery, but otherwise led an active life playing soccer, basketball and volleyball.

“I knew my limits, but other than that I didn’t really feel different,” she said. She thought everyone had as many doctor visits as she did.

Though she’d never heard the words “congenital heart defect,” as she got older she began to understand her unique medical condition. Occasionally fellow students teased Nadia about her surgery scar.

“It was really hard for me not being able to explain how I was different or why I was different,” said Nadia.

Then, in seventh grade while playing soccer it became difficult to breathe, and her life took a dramatic turn.

Her second open-heart surgery was later that year at age 12. Doctors at Seattle Children’s Hospital performed a pulmonary valve transplant and placed a pig valve in her heart.

“It was a whirlwind, like, wow, how can this be happening to me?” she recalled. “It was really, really, really scary.”

With a stuffed animal beside her entering surgery, Nadia thought: “How can I die? I’m only 12 years old.”

Afterward, she awoke in the intensive care unit and saw her mother, Jo LuQman, nearby, as always, watching over her. Nadia thought, “I’m here. I made it!”

Dawn McCutcheon and Nadia LuQman at an American Heart Association gala last year in Tacoma.

Dawn McCutcheon and Nadia LuQman at an American Heart Association gala last year in Tacoma.

Later, Nadia connected with survivor Dawn McCutcheon of the American Heart Association, who asked her to share her story as a spokesperson through the association’s youth market programs. Now a senior at Eastlake High School in Seattle, Nadia has helped her school raise thousands of dollars through Jump Rope For Heart. She has also spoken at dozens of schools and to all ages.

“When I tell them I have a pig’s valve in my heart, I see their eyes light up,” she said. “There’s always this one kid who goes, ‘Wow! Really?’ ”

Her deeper message is clear: Heart disease can affect anyone, even children.

Nadia is getting more involved in activities such as the local Heart Ball and lobby day at her state capitol. She is also a Go Red For Women ambassador in Seattle.

At some point, Nadia may need valve replacement surgery. But for now, she’s active and doing fine.

“I’m happy. I’m healthy,” she said.

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Photos courtesy of Nadia LuQman and Barbie Hull Photography