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'Just Like Any Kid': Despite 3 open-heart surgeries, youth, 13, leads a normal life
Journal Photo by Bruce Chapman
Stephane Rogers listens to her son, Keenan, 13, talk about what it is like living with a congenital heart defect called pulmonary artresia.
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Published: October 17, 2009
When Keenan Rogers was nine months old, he underwent open-heart surgery for the second time.
This was to replace a pulmonary valve and to repair other heart defects. Keenan, 13, had his first heart-related surgery when he was 36 hours old, the result of a congenital cardiovascular defect.
At some point, valves wear out and additional surgery is needed to replace them, something that Keenan experienced when he was 10 and will experience again and again -- unless current research leads to patients growing new valves from their own tissue.
"That would cure a lot of people," Keenan said "That's what I hope the most for."
Keenan, who has had open-heart surgery three times in 13 years, is doing his best to turn this hope into a reality. He is participating in the 2009 Start! Tanglewood Heart and Stroke Walk today at Tanglewood Park in Clemmons and hopes to exceed the $1,600 that he raised at the walk last year.
In the meantime, Keenan's parents, Steve and Stephane Rogers, continue to do all they can to support their child. Despite what Steve described as the frustration of not knowing "what the future holds, how healthy the heart's going to be and how well it's going to stand up," he and Stephane can point to a remarkable success story:
Keenan is leading a normal life -- minus participation in high-contact, team sports that might endanger his health. He earned a black belt in tae kwon do last December, reads voraciously and has filled the basement of the Rogerses' home with a city that he has built out of Legos.
He has a congenital heart defect known as pulmonary artresia -- "no pulmonary valve exists, so blood can't flow from the right ventricle into the pulmonary artery and on to the lungs," according to a description provided by the American Heart Association.
The association says that 1.3 million Americans have a heart defect and that at least nine of every 1,000 infants (about 36,000) are born with one. Surgery can help most children born with a heart defect, even if it is severe.
Steve works in the marketing department at Reynolds American Inc. He was asked what he'd tell other parents trying to raise a survivor of congenital heart defect.
"I'd advise them to make good choices in terms of their lifestyles," he said. "I'd advise them not to give up, to always keep searching for whatever it is that can help their child."
This can be a formidable task.
Before it was clear that Keenan, an only child, would become the relatively robust person that he is today, for example, the Rogerses had to work extra hard not to expose him to germs or illnesses. They avoided taking him to church or to the mall. They washed their hands incessantly.
If someone at a gathering of family and friends was thought to be sick, they stayed away. When Steve or Stephane became ill, they put on a protective mask. Stephane said that when the family ate at a restaurant, she didn't wait for someone to wipe down a table. She did it herself, with extra thoroughness.
As for the diet, the Rogerses favor fresh, organic food, though they eat pizza once a week.
"Nobody ever told us to alter (the diet) in any way," Stephane said. "It was just my motherly instincts saying, ‘He's got to put everything in his body that's going to give him a fighting chance.'"
How should a child like Keenan be treated?
Steve said to treat him "just like any other kid, with certain limitations, obviously."
But if Keenan's case is any indication, it may take some time for someone like him to feel like any kid.
"I hated taking my shirt off," Keenan said, describing much of his youth. "I hated it. That's probably part of the reason I disliked going to the pool."
Keenan also said he was self-conscious about everything, stayed away from crowds, feared making errors and always worried about what others thought. "I just wanted to be silent and sit in the corner," he said.
Tae kwon do, which Keenan started three years ago, has become the solution.
"Tae kwon do has taught me to try my best and not to be afraid of making mistakes," Keenan wrote in an essay titled Tae Kwon Do and My Life. "But that's not all tae kwon do has taught me. I've learned not to be afraid of everything."
kkeuffel@wsjournal.com | 727-7337
The 2009 Start! Tanglewood Heart and Stroke Walk will be held today at Tanglewood Park in Clemmons. The walk will begin at 9 a.m., preceded by check-in and wellness activities at 7:30 a.m. For more information, see www.starttanglewoodnc.org/
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