Halloween is an especially meaningful day for Jared Ausnehmer and his family. On Oct. 31, 2011, Jared's family saw a news story about a man who had had stem cells injected into his heart to reverse damage from a heart attack. Jared's mom, Patty Ausnehmer, wondered if this type of treatment could help her son, who was born with hypoplastic left heart syndrome — a birth defect in which the left side of the heart is underdeveloped or nonexistent.
The news story kicked off a search for answers that led Jared and Patty to Mayo Clinic's Rochester campus, where he participated in an innovative clinical trial. The trial paved the way for Jared to have successful heart surgery. As a result, Jared is no longer weighed down by his heart condition, and he's returned to the athletic activities he enjoys.
"Mayo Clinic is an amazing place. They care, and they know what they're doing," Jared says. "I'm most grateful that I'm not sick anymore and everything went well. You can't take that for granted."
Search for something better
A rare congenital heart disease, hypoplastic left heart syndrome affects only about 1,000 newborns in the U.S. each year. Jared received a variety of treatments, including multiple surgeries during his first year of life and medications to improve his heart function. Still, by the time Jared reached his early 20s, his heart was enlarged and its neoaortic valve was leaking badly.
"I just didn't feel well. I was tired all the time and was retaining a lot of fluid," says Jared, who went from playing basketball and softball, and running track in the Special Olympics, to lying on the couch all day.
Eager for a new treatment option, Patty called the hospital that was mentioned on the news. Unfortunately, they weren't doing stem cell therapy for Jared's condition. But she didn't stop there. The story spurred Patty to learn more about the possibility of stem cell therapy for hypoplastic left heart syndrome.
In the course of her research, Patty found Mayo Clinic's Center for Regenerative Medicine and had a phone consult with Tim Nelson, M.D., Ph.D., a Mayo Clinic physician and researcher whose work focuses on congenital heart disease. Dr. Nelson told Patty that Mayo Clinic was starting stem cell therapy for infants with hypoplastic left heart syndrome but not for young adults like Jared.
"I explained our mission and desire to design such a trial in the future," Dr. Nelson says.
Although treatment with stem cells wasn't an option at that time, Jared and his family learned that through Mayo Clinic's Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome, he could participate in another study and receive care from Mayo Clinic doctors with years of experience in treating the condition until a stem cell clinical trial became available.
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. To learn more or to participate in the research, email HLHS@mayo.edu and follow the HLHS program on Facebook, Twitter and Instagram.