Connected by little hearts

Jeffrey as an infant

When Jeffrey Cameron was born in 1996, he seemed to be a perfectly healthy baby. Then, at just ten days old, baby Jeffrey went into acute respiratory distress and was taken by air ambulance to a local children’s hospital where he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), meaning the left side of his heart was underdeveloped and couldn’t pump blood properly.

After a dizzying round of meetings with doctors, Jeffrey’s parents, Lenore and Tim, were presented with a set of difficult choices: Jeffrey could have a heart transplant, undergo a series of three open heart surgeries, or they could let him die at home.

“The doctors outlined our choices for us, and their exact words were, ‘You have three options and they’re all not very good,’” Lenore says. “We were told that transplant hearts for infants were extremely hard to come by and the that the 3-staged surgery was experimental. They said even if Jeffrey lived he might not have any real quality of life after all the surgeries.”

Based on the information presented to them by doctors, Lenore and her husband were under the impression that there was little hope for Jeffrey. After agonizing over the decision, the Cameron’s brought Jeffrey home with them so the family could enjoy what little time they had together in the comfort of their own house. It was a devastating time for them, but as the days wore on and Jeffrey continued to fight, friends and family asked the grieving couple to consider getting a second opinion. They began researching other treatment centers and learned that Children’s Hospital Boston had been successfully treating HLHS since the early 1980s, and patients with the condition were routinely sent there from all over the world.

The Cameron’s had spent five days coming to terms with the idea that their son had little chance for survival, but suddenly they felt a glimmer of hope. A phone call was made to Richard Jonas, MD, Children’s chief of Cardiovascular Surgery at the time, and a few minutes later they saw things in a very different light.

“We talked to Dr. Jonas for just a short time, but those few minutes changed everything,” says Lenore. “He told us that if Jeffrey went to Children’s Heart Center he would have a 75 percent chance of survival for the Norwood procedure, which is the first and most difficult of the three HLHS surgeries. When given those odds, the question went from, ‘What should we do?’ to ‘How soon can we get to Boston?'”

Five minutes after hanging up with Dr. Jonas, the Cameron’s had packed suitcases and were en route to Children’s. Three days later, at just over two weeks old, Jeffrey had the first of three heart procedures. The surgery was a success and two weeks later he was back home. Seven months passed before Jeffrey returned to Boston for his second surgery, and by the summer of 2001 he was ready for his third and final procedure. That September, the boy that wasn’t expected to live longer than a few days was heading off for his first day of school.

“When we first got the diagnosis we never imagined he’d get that far,” Lenore says. “It was amazing.”

Jeffrey owes his life to the work of Dr. Jonas and his pediatric cardiologist, Michael Freed, MD, but Lenore says it was the support and guidance of other parents that helped her get through the stress of raising a child with HLHS. While the family was in Boston for Jeffrey’s second surgery, Lenore met a mother’s whose son was Jeffrey’s age and also living with HLHS. The two women obviously had a lot in common and through their friendship Lenore was introduced to other parents whose children were living with the condition. Before she knew it Lenore had established a network of nine heart families, all at various stages of treatment.

The group spent weeks trading phone calls and supporting each other. As they became more close-knit, Lenore decided it would be nice to take a group photo of their kids, which could then be shared with other parents just learning about their baby’s HLHS.

“I wanted to capture how well everyone was doing to give hope to other parents of kids with HLHS, because so many of us didn’t have that when our children were diagnosed,” she says.

Michael Freed, MD

She organized a small get together at a local pizza joint so the group could take the picture and connect in real time. The ability to put faces to all the names she had been hearing for the past few weeks made Lenore realize just how important the tiny community she had built had become to her.

“For me it was so comforting to interact with other families who understood what I was going through,” she says. “Seeing the older kids laugh, eat pizza and just get be regular kids really gave me hope for Jeffrey,” she says.

After the party the group’s communication increased and more families living with heart conditions were brought into the fold. When Lenore hosted their next get together the attendance numbers had spiked from nine families to 37. Realizing this was more than a social club who shared a similar experience, Lenore founded Little Hearts, Inc., an organization dedicated to connecting parents of children born with congenital heart defects (CHD).

It’s been 16 years since those first nine families met in a Massachusetts pizza parlor, and the a lot has changed since then. Little Hearts is now a national CHD organization and the group’s numbers have grown from a handful of members to over 3,000 people. Emails and message board postings outnumber phone calls these days, but the connectivity that initially made the group so special has remained intact.

Jeffrey today

“If we talk to our next door neighbors who have kids, all they can say is ‘I’m so sorry your family had to go through that,'” Lenore says. “But when you sit down with another heart family there’s this automatic understanding and bond you have that’s very comforting. I’m glad it was there when I needed it and glad Little Hearts can help provide that comfort to so many other families today.”

And while her main reason for starting Little Hearts has grown up, (Jeffrey is now a happy, healthy high school sophomore) Lenore says the joy she gets from connecting other heart families means as much to her today as it did 16 years ago.

“Because Jeffrey has been doing well for so long, I sometimes forget how important our gatherings can be,” she says. “It’s not until I watch a new member come to their first Little Hearts picnic and I see their reaction to all those red balloons and smiling faces on the older, healthy kids that I remember why I started the group in the first place. That connection is very important to them. It’s important to all of us.”

To learn more about HLHS and other CHDs: