Enduring Hearts: A race against time for pediatric heart transplant research

Dr. Mahie treats a young patient at Children’s Healthcare of Atlanta.

This February as we celebrate all things hearts – from candy and flowers, to romance, to cardio workouts – Atlanta-based Enduring Hearts will hold its 4th annual Bourbon Gala & Auction on Feb. 15 to raise funds for pediatric heart transplant research.

“A heart transplant is not a cure. It’s only a bridge to life. Our goal is to be laser focused on helping these children live a long, healthy life,” said Enduring Hearts Executive Director Carolyn Salvador. According to the CDC, nearly 40,000 babies per year have congenital heart defects, one quarter of which are considered critical.

While there are many organizations that fund heart research, Enduring Hearts is the only one solely dedicated to helping children who have received or require transplanted hearts.

Launched in 2013, Enduring Hearts has funded more than $3 million in research that seeks to increase the longevity of pediatric heart transplants, improve quality of life for transplant recipients and eliminate pediatric heart disease.

This labor of love began unexpectedly during family trip to Disney World three years earlier. That’s when an otherwise healthy 15-month old little girl went into heart failure. And on her third birthday she was rushed to the hospital in Atlanta and placed on the transplant list, where she bravely waited alongside her extended family for six months until she received a new heart.

“The family thought once she received the transplant ‘surely she is cured.’ What they realized is that’s not the case. The average heart transplant only lasts around 12 years and those aren’t great years,” Salvador shared.

A quarter of recipients may need another heart transplant within five years. Of those who have another transplant, nearly half will not survive. The girl’s father, Patrick Gahan, founded Enduring Hearts to change these outcomes.

“What impressed me about him [Gahan] is he had the means to seek out the best treatment for his child. Instead of just focusing on his sweet daughter, he put on this bigger hat and said, ‘I’m going to throw all of my energy into Enduring Hearts,’” Salvador said.

And the research could also have direct implications for adults with heart failure.

“We work with esteemed research institutions across North America to find and fund the best and most promising research,” Salvador said. Their Scientist Advisory Committee of pediatric cardiologists, researchers, immunologists peer review, rate and curate their research.

A board member’s 7-year old son exemplifies why the research is so critical. Three years ago he had a heart transplant and was immediately put on harsh immunosuppressant drugs to combat organ rejection. Side effects from the drugs can cause damage to the child’s kidneys, liver, pancreas and the intestines and even increase the risk of certain cancers.

During the holidays, the son was diagnosed with lymphoma, a type of cancer, and is undergoing chemotherapy.

“Our research is looking at the toxicity of the drugs, less evasive and more comprehensive ways to detect organ rejection and prolonging a heart transplant duration beyond 12 years. So these children can live not just a longer life, but a happy healthier life,” Salvador said.

Enduring Hearts fund seed innovation research, in the $100,000 to $200,000 range. Many studies are published in medical journals that are propelling more research at higher levels of funding.

“We have 28-plus abstracts, publications, and presentations at American Heart Institute, International Society of Heart and Lung and in a variety of research annals. That tells us we are having success,” Salvador said.

The nonprofit also supports families of children who have received heart transplant or are awaiting one through a gas card program to mitigate travel costs and by sharing information, including a Q&A forum with a Pediatric Cardiologist and Researcher “Ask Dr. Boo.”

For the Enduring Hearts Bourbon Gala & Auction, which will be held in the Stave Room at American Spirit Works, the organization is hoping to surpass last year’s goal and raise $350,000.

“We rely on donations, so it’s important to educate the public about the need for transplant research. It’s a race against time for these children. There is no one else doing what we do. Help us help them,” Salvador said.

For more information about the organization, visit enduringhearts.org.

No Comments Yet

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Sign up for our emails

Enter your email and stay on top of local news!