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Pediatric Heart Support Groups Offer Help

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By MARY SHEDDEN | The Tampa Tribune

Published: February 12, 2009

The struggles pediatric heart patient families face go far beyond the physical realities.

Emotional and financial strains are constant, says Marlee Huggins, mother of 7-year-old Kalani, pictured below, who underwent her first open-heart surgery when she was just 11 days-old.

"When you look at her, she looks like a normal, everyday child," the Oldsmar resident says of her daughter's disease, which is visible only by the scars on her chest.

But even that can cause problems. A simple invitation to a pool party gets complicated, because Kalani's heart reacts poorly to water that's too cold. Huggins says once a phone call asking the host if the pool was heated met with remarks that Kalani was spoiled.

The restrictions also can put a strain on Kalani's siblings, ages 11 and 5, who sometimes feel slighted because of the attention a child with special needs requires.

A little thing such as getting Kalani's teeth filled can involve trips to the hospital and cost hundreds, even thousands of dollars, despite insurance co-payments.

You can't just go to the dentist's office, because they don't have crash carts, says Huggins, who recently started a group called Cardiac Kids of Florida, to help pediatric heart patient families cover medical costs.

Congenital heart disease support groups, such as Mended Little Hearts locally, create communities where these struggles are the norm, says Carrie Garcia, mother of 13-year-old cardiac patient Cameron Townsend. The group meets monthly at All Children's Hospital in St. Petersburg.

It also is a place where parents of young children can see what they may face months and years in the future. Garcia's son, for example, is now an active partner in treating his heart condition.

In fact, Cameron was the one who realized it was time for a new surgery, when he could run only eight and not the usual 24 laps around the gym in P.E. class.

Still, Garcia says she's as concerned as she was the day they discovered his heart condition as a newborn. "It gets different," Garcia says. "You get different worries."

Cameron has a little different perspective. He says his life is normal, except that he can't play organized football like many of his friends.

And he likes being a role model for younger patients, who are just starting to understand the problems and potential joys they face.

"I think being here lets their parents maybe know their kids will someday be OK," he says.

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