Keith McIntire isn’t supposed to be alive. He’s a miracle. He’s also adamant that this story isn’t about him.

To Keith, the real story is the summer camp for kids with congenital heart disease (CHD) that he helped to found in 1991. But to tell the story of Dr. Bill Neches Heart Camp for Kids, held annually at Camp Kon-O-Kwee in Merion Township, Pennsylvania, you have to tell Keith’s story, too. Neither story would be quite the same without the other.

Born in 1959 with a rare heart defect called Tetralogy of Fallot with absent pulmonary leaflets, Keith underwent his first surgery at UPMC Children’s Hospital of Pittsburgh when he was just 9 months old to have what was believed to be a bronchial cyst removed. That surgery turned exploratory in nature when it was discovered that the spherical dilation that was seen on the x-ray was on the pulmonary, not the bronchial artery. It was then that doctors discovered Keith was missing a pulmonary valve and diagnosed his heart condition. Because of the rare defect, Keith was never expected to survive to his first birthday – let alone until his 16th – when he had his second heart surgery.

“When I was diagnosed in the early 60s, my parents were sent home with me and the doctors said, ‘just take him home and love him, there’s nothing we can do at this time.’ And they did,” says Keith. “They let me do all the things I wanted to do. They didn’t try to coddle me, and I just kept going year after year.”

Never Miss a Beat!

Get Healthy Tips Sent to Your Phone!

Message and data rates may apply. Text the word STOP to opt out and HELP for help. Click here to view the privacy and terms.

A Pediatric Transplant First at UPMC Children’s Hospital

Finally, at age 16, Keith received the first-ever porcine, or pig-heart, valve surgery at UPMC Children’s. That valve served him well until he was 23 when he received the mechanical valve that he has to this day.

Test your knowledge of congenital heart disease with this quiz.

“I was definitely a part of some ‘firsts’ at Children’s,” says Keith. “For many years I was their poster child for pediatric cardiac care. I’m actually Children’s oldest living heart patient that they have followed since birth. I’m pretty fortunate.”

A Camp with Heart | UPMC HealthBeat

Also fortunate are the kids who have attended the camp that Keith helped found with the now-retired pediatric cardiologist, Dr. Bill Neches. All of the campers have been UPMC Children’s patients, too, and each is a CHD survivor. A number of them have stories as miraculous as Keith’s. And though the camp itself is held just one week a year, many campers return each year, eventually becoming counselors and adult volunteers. It has become quite a community.

Learn more about heart valve transplant options.

Dr. Bill Neches Heart Camp for Kids: Fun and Educational

The campers, all from the tri-state area, have been afforded world-class care at UPMC Children’s, which established the nation’s first pediatric transplant center in 1981 under the guidance of transplant pioneer Thomas E. Starzl, MD, PhD. UPMC Children’s has performed more pediatric transplants than any other pediatric transplant center. It welcomes children and families from all over the world for its expertise, innovation, and achieves patient survival rates that are among the highest in the world.

“When Dr. Neches came to me with the idea of this camp, he wanted to bring kids with CHD together to show them that they aren’t alone, different, or too fragile to run and play and live their lives,” says Keith. “The camp encourages kids to be kids without allowing heart disease to limit them.”

While children with CHD do not face the grim prognosis that Keith faced all those years ago, they often feel isolated and begin to doubt their abilities. Consequently, Heart Camp seeks to build confidence and afford children the opportunity to try new things, while learning about their health and hearts. The camp has clinician volunteers who interact with the kids. Special sessions let campers ask questions about their hearts.

“Kids get to talk with doctors at camp and ask questions that they might not ask if their mom or dad was around,” says Keith. “We really want them to learn about their hearts so they can be their own health advocates one day. We have sly ways of making camp as educational as it is fun.”

Former Heart Campers Make Good

Clearly, it’s working. Former campers have gone on to work on CHD initiatives, either professionally, philanthropically, or both. Off the top of his head, Keith can point to former campers who work in research, medicine, and the pharmaceutical industry. One is going to Harvard to become a pediatric cardiac surgeon. Another is a Ph.D. doing research in technologies that can heal heart defects. Several have gone into nursing as well. Keith himself works in Medical Genetics at UPMC Children’s.

What’s obvious is that current campers are having fun, making friends, gaining confidence, learning about themselves, and realizing just how lucky they are to have had great care that lets them live full lives. It’s also clear that camp is having a lasting impact on former campers and encouraging them to pay their good fortune forward to help others who are just beginning their CHD journeys.

Heart Camp Remains Close to Keith’s Heart

And though Keith never wanted this story to be about him, as he heads into another summer as director of Dr. Bill Neches Heart Camp for Kids, a position that he held in a volunteer capacity until six years ago when he was formally hired to run the camp, he exemplifies paying it forward to others as well as anyone could hope to.

“I didn’t expect to be at the camp all these years,” says Keith. “It has become a full-time job in its own right. But I’ll always remember years ago when a little boy looked up at me and asked how old I was. At the time, I was 33. He was in awe and said that he never expected to live that long. I knew then that I couldn’t leave this camp. I had to share my hope with these kids.”

About UPMC

Headquartered in Pittsburgh, UPMC is a world-renowned health care provider and insurer. We operate 40 hospitals and 800 doctors’ offices and outpatient centers, with locations throughout Pennsylvania, Maryland, New York, West Virginia, and internationally. We employ 4,900 physicians, and we are leaders in clinical care, groundbreaking research, and treatment breakthroughs. U.S. News & World Report consistently ranks UPMC Presbyterian Shadyside as one of the nation’s best hospitals in many specialties and ranks UPMC Children’s Hospital of Pittsburgh on its Honor Roll of America’s Best Children’s Hospitals. We are dedicated to providing Life Changing Medicine to our communities.