Brian Littrell Healthy Heart Club for Kids

Backstreet Boy helps heal young hearts

Aug. 18, 2000

By A.J.S. Rayl With medical adviser Stephen A. Shoop, M.D. A Doctor In Your House.com

To watch Backstreet Boy Brian Littrell in action, who could imagine that the pop sensation was born with a hole in his heart? Or that he had a very serious infection called bacterial endocarditis when he was 5? Or that his heart condition would ultimately lead to the creation of one of the most innovative - and needed - children's charities around? As every fan knows, about two years ago Littrell had open-heart surgery to correct a ventricular septal defect (VSD), the most common congenital heart condition (A Doctor In Your House, May 12, 2000). Although many with this problem are operated on as children, Brian was an exception. "He was asymptomatic: His heart size was normal, and he was active," says his pediatric cardiologist, Jacqueline Noonan, world-renowned for her identification of a multiple malformation condition known as Noonan Syndrome. "It was my opinion that he did not require surgery." Littrell passed his "heart physicals" annually until three years ago when, at age 22, a checkup revealed that his heart was swelling. It was then that the operation was recommended.

A chance to give something back

By Brian's reckoning, it was the "perfect time" to give back. He knew from personal experience that being a kid with a heart condition isn't easy. So he decided to focus his charitable energy on children. Littrell decided to make a donation to St. Joseph Hospital in Lexington, Ky., his hometown hospital where he had been treated as a child. But that was only the beginning. Brian knew that word about his surgery would get out. Rather than deal with rumors and innuendo, he planned to make an announcement and use the media coverage as an opportunity to ask fans who wanted to send something to him to instead consider supporting his charity. "Brian's mother, Jackie, who is also his business manager, came in and explained that he wanted to endow a fund that would be ongoing. So we set up a committee," says Ed Wardle, executive director of the St. Joseph Hospital Foundation. "But I honestly didn't know who Brian Littrell was or what the Backstreet Boys were. "Jackie asked if we would be willing to receive the mail that would come in after his surgery, and we just said, 'Sure,' " Wardle says. "She said it would probably be a lot. We just said 'no problem' and didn't think too much about it." Little did he know.

Concept built on education

Although Brian had initially assumed that his fund would help pay for surgeries, Noonan - who joined Jackie Littrell and other physicians and nurses from St. Joseph's on the committee - suggested that they think in a different direction. "A child with heart disease is going to get heart surgery, either through insurance, a medical card, or the commission for children with special health needs that is present in every state," Noonan says. "No child is denied because they don't have money. "But while all of our newfound HMOs are talking about preventive medicine, that's only been lip service. What we really need are good rehabilitation and education programs for children and adults." Brian jumped right into that concept, Noonan says, "because he's very active physically, and he knew the importance of such a program." Weeks of discussions and planning led to a new model program that would offer lifestyle education - lessons about exercise and nutrition - and rehabilitation to children who had heart surgery, who were candidates for heart surgery or who were at high risk for having future heart problems because of hypertension, asthma and especially obesity. "All these children would benefit from a program that would teach them how to improve their physical condition," Noonan says. The concept meshed perfectly with Brian's grand goals. "The reason I started this club was to benefit children in need, to boost kids' confidence, and to give them a way to feel better about themselves, and to provide some funding for research for heart deficiencies." By spring 1998, just before Brian's surgery at the Mayo Clinic, the Brian Littrell Healthy Heart Club for Kids was officially founded.

Prescription for kids: Self-esteem

At the suggestion of Marilyn Swinford, director of the St. Joseph's ER and one of Brian's childhood nurses, the committee (Brian) decided to use the word "club" in the name because "these are children who can't belong to many, if any, of the other clubs at school," Jackie Littrell says. "These kids come to us with such low self-esteem. They have always kind of segregated themselves from their friends. Peers can be the hardest people to deal with when you don't function just like everyone else. They just come in with their heads hung really low." Says Brian: "We wanted the club to be a place where they felt they truly belonged, and where they could learn that active is good. In most cases, a child born with a heart deficiency would automatically think they just could not be active." But Brian is living proof that that's not always true. "Brian was always active," Jackie Littrell says. "Even though I, as a mother, sometimes worried about him being too active, I let him do his thing because it made him happy. "The only sport that I didn't let him play was football," she says. "I just felt it was too much of a contact sport. I was afraid he would take a helmet to the chest and have a cardiac arrest. But I let him play every other sport there was." "You let me run up and down the basketball court with my tongue hanging out," Brian complains good-naturedly, "but you wouldn't let me play football." They laugh about that today. But Brian's active ways "turned out to just come back to him threefold," his mother says. He came through his open-heart surgery with flying colors "because he was strong going in."

The mail poured in

To everyone's surprise, during the operation the surgeon not only found the VSD but another large hole in the tricuspid valve. "We had no idea," Jackie sighs. "It's amazing that things like that can still be hidden from all our technology." While Brian was on the mend, the mail began pouring in. "It was then, I think, that I finally understood what it meant that he was a Backstreet Boy," Wardle says. "The bottom line: Over the next 12 months, we got written communications - letters, boxes and gifts - from all over the world, 41 countries and more than 5,000 individuals." Wardle estimates that about 15% of the mail included contributions. "And a number of those folks have become ongoing contributors," he adds. "It was precious, just precious. Little girls sending their babysitting money," Jackie Littrell says, "and stories that would wrench your heart." For Brian, life is only getting sweeter. He's back on tour, active as ever. And this fall he plans to marry his fiancee, Leighanne Wallace. (Sorry, girls.)

Heart-to-heart connections

Meanwhile, the Brian Littrell Healthy Heart Club for Kids is beating right along. The third eight-week session has just ended, and there are now 45 "lifetime members." "It was awesome," says Johnna Kendall, 16, a charter member of the club. "We would exercise every day, learn about nutrition, and just basically how to take care of ourselves. And we really got to know each other." Johnna, who has a condition known as tetralogy of Fallot, a congenital cardiac anomaly that consists of four defects (VSD, pulmonary stenosis, malposition of the aorta and right ventricular hypertrophy), has "always been pretty limited" when it comes to physical activities. That has made her feel alienated, she says. "But in the club, it was a lot of fun because I've never been able to exercise like that before," Kendall says. "Plus, it's nice to be around people who you can talk to, and who can sit there and say, 'I know exactly what you mean.' "I can't talk to a lot of my friends about my heart problem because they couldn't understand," she says. "At the club, I just felt like I was a part of something very special. It's been the best experience of my life so far." The future is looking brighter for other children with heart conditions, too. The Club is expanding into two new YMCAs in Lexington, and the plan is to spread it to other cities across the USA. "Our vision," Wardle says, "is that we have 100,000 children a year going through this program in every major community in this country and in several foreign countries." Summer camps and reunions are also on the horizon. "We want to do what we can to help them keep up a healthy lifestyle," Noonan says. "This isn't going to help them if they just do it for that eight weeks." Helping in as many ways as possible is what this endeavor is all about. "I've known Brian since he was a baby, and he's a fine young man," Noonan says. "It's wonderful to see young celebrities who are thinking of others." But as Brian and his mother see it, the joy is all theirs. "The more you give the more blessed you are," Jackie says. "We all really believe that."

For more information: www.healthyheartclub.org.

The Brian Littrell Healthy Heart Club for Kids: Saint Joseph Hospital Foundation P.O. Box 8490 Lexington, KY 40533