Adult Congenital Heart Disease Program

Patient Stories | Joan and Congenital Heart Defect

Reconnecting 52 Years After the First Successful Senning Procedure in the United States

It was 52 years before Joan Schuman was able to meet the man who saved her life. When it finally happened, the emotions in the room left tears in everyone’s eyes.  

Many patients born with congenital heart defects don’t realize that their survival was dependent on a surgeon somewhere. But Joan, now 53, knew growing-up that her life was placed squarely in the hands of single man when she was just 10 weeks old.

That person was Cincinnati Children’s pioneering heart-surgeon James A. Helmsworth. Joan knew his name even as a youngster because her mother, Pat, had a Time magazine clipping about him and the innovative surgery he performed on Joan.

Born with transposition of the great arteries, no surgeon had successfully performed the Senning procedure that could potentially correct the defect. Pat’s options for her daughter seemed hopeless.

“We were going to lose her,” Pat remembered. “We met with a doctor who told us we could try to keep her as long as we could, or we could try the surgery. But the surgery had never been successful on an infant. They warned us that even if she survived she could be handicapped.”

It was more than a long shot, but it was the only shot they had.

It took just 41 minutes, but in that time Dr. Helmsworth performed the first successful Senning operation in the U.S., and possibly the world. The medical community celebrated and the media, including Time magazine, picked up the story of Dr. Helmsworth’s success.

Joan and her mother had longed talked about Dr. Helmsworth. Joan wondered if he knew she had long survived, and her mom had always wanted to personally thank him.

“It was a dream of mine to meet him. I thought he was no longer living until I saw an article saying that he was about to celebrate his 100^th birthday,” Pat said. 

In a stroke of luck, coincidence, or as Pat considers it, fate, Dr. Helmsworth resided in an assisted living facility alongside a friend of the family. Though he was ill and quickly nearing the end of his life, he agreed to see the Schuman family.

“I don’t think he knew who we were at first, but my mom took all of the articles with her,” Joan said. The articles from the local papers and Time Magazine celebrated his successful Senning operation.

“He looked at the articles and looked back at me, and he knew who I was. I just started crying. I was just really so thrilled to meet the person who saved my life,” Joan said. “He put his arm around me and I put my arm around him.”

The family visited with him for only 15 minutes, but it provided them the opportunity to thank him. As the family left his room, Pat was the last to walk out. Overwhelmed with gratitude, Dr. Helmsworth said to her as she left, “You have made my day.”

“I just started to cry. He was just so gracious,” Pat said. “To me, he was somebody you cannot say thank you to enough.”

Dr. Helmsworth died in August 2015, just weeks after meeting the Schumans. He saved many lives over his career, and one of them was Joan’s. 

Information for Adults with Congenital Heart Disease

Ongoing care of congenital heart conditions is critical for those born with a congenital heart defect, even into adulthood. Regular follow-up appointments — once a year or every other year, depending on the condition — are imperative because as a repaired heart from early childhood grows and adapts through life, negative consequences can take place, such as heart rhythm disturbances, leaky valves, strokes, obstruction, or even heart failure.

This type of heart deterioration does not happen overnight. If deterioration in heart function is caught early, there are several therapies that can prevent catastrophic side effects from happening.  

About 1 in 100 babies are born with a congenital heart defect (CHD) each year.

(Published July 2016)