Little Hearts Picnic a 'Celebration of Life'

The 14th annual Little Hearts Inc. picnic for children born with congenital heart defects held on Sunday was your average cookout/get-together but for one major exception.

To be sure, out of the 600 or so people in attendance at Winding Trails in Farmington, there were dozens of children running, swinging, canoeing, bounding in the bounce houses, playing softball and eating pizza, hamburgers and hotdogs that were washed down with gallons of sugary soft drinks supplied by in Granby.

The one major difference, however, was that some of the 140 or so kids were showing off scars on their chests and sides from the various operations they’ve had throughout their young lives.

'We took him home to die'

Little Hearts Inc. was founded by Cromwell’s Lenore Cameron in 1996 after the experience she had when her second son, Jeffrey, was diagnosed with hypoplastic left heart syndrome.

Jeffrey’s doctors gave Lenore and her husband, Tim Cameron, three difficult options: 1. comfort care, which essentially meant taking their 10-day-old son home to die; 2. have him undergo three-stage heart surgery; or 3. wait for a heart transplant.

The Cameron’s, without any support network, initially opted for the first choice, taking Jeffrey home with the knowledge that he would pass away shortly thereafter.

“We didn’t think there was hope for our son; we took him home to die,” Lenore said in a telephone interview Saturday.

After five days, several relatives convinced the Camerons to call a Boston hospital and see what the staff had to say.

“The doctors said, ‘If the success rate of the surgery is 75 percent, why wouldn’t you do the surgery?’” Lenore recalled.

So Jeffrey underwent the first of three surgeries and the good news is that after spending 18 days in the hospital, he began to recover.

“My son turns 16 on Wednesday [June 6],” Tim Cameron said on Sunday.

But the process left the Camerons “numb” according to Lenore.

“It was overwhelming,” Lenore said. “I didn’t have any other heart families to talk to.”

Indeed, federal law prevents doctors from sharing information of patients with other families and patients.

So Lenore formed Little Hearts Inc., which connects parents with other parents who have children with heart defects.

The website contains myriad resources for parents to collect information on various congentital heart defects, doctors and treatments, as well as a section of stories of hope to provide some much-needed encouragement during an incredibly difficult time.

“When something like this happens to a family, it changes the chemistry of the family,” Tim Cameron said. “[Little Hearts] is a community of people who have undergone similar things.”

Paul Everidge said that Little Hearts provided a human element to the process when his son was diagnosed with a heart defect.

“The doctors told us what to expect medically,” Everidge said. “Little Hearts allowed us to talk to parents who have gone through real-life experiences and live with the day-to-day stuff after they get home.”

A celebration of life

Part of the Little Hearts experience is the annual picnic, which is attended by families from all over the country, as well as a couple of doctors who get to see the end result of their work.

The kids do everything that kids normally do - except for the comparing and sharing of scars - and just enjoy being young during the day.

“They don’t feel like they’re the only ones with this problem,” said Paul Johnson, whose son, 14-year-old Logan, was born with a congenital heart defect. Johnson’s father, , which caters the event every year despite Sunday being the busiest day of the week for the tiny Granby restaurant.

The picnic is also meaningful to parents, who see older surviving children.

“It means hope,” parent Judy Walsh said. “It’s very comforting and gives me peace that there’s a chance [my 2 ½-year-old daughter] will have a future.”

But there’s even more to the picnic than play and hope, as Lenore Cameron put it.

“It’s a celebration of life,” Lenore added.

For more information on the organization, including how to donate, visit Little Hearts Inc.’s website here.