Health Care Reform, Family Style NEW PORT RICHEY (WUSF) - Congress is taking a look at health care reform this week and it seems most everyone has an opinion. Among the lobbyists and special interest groups vying to be heard is the National Association of Children's Hospitals. Like many groups, it has recruited some "real folks" to help get their message across including a family from New Port Richey.

Chris Wilson's world shifted dramatically the day after his second son was born. Blake was born with a heart defect: the left side of his heart was not fully formed.

"It was a whirlwind after that," Chris said. "Within an hour, they were "Bay-flighting" him to St. Joseph's Hospital and he was already there and being worked on before we even got there by car."

The Wilson family spent the next six weeks at St. Joseph's Children's Hospital as Blake underwent the first of three surgeries to basically re-plumb his heart. His mother, Adrienne, says he's now a typical 5-year-old.

"I did not think Blake was going to be like," Adrienne Wilson said. "If you would put him in a crowd with all his other preschool kids, you would never know that Blake has basically half a heart, as they like to say. He's normal."

Blake rides a bike like most 5-year-olds and his older brother Zachery, a skateboarder, is teaching him how to use the skateboard ramps.

"Toughy" is the nickname they gave Blake for surviving three open heart surgeries before his fifth birthday.

But, Chris also uses the word "tough" when he talks about paying the medical bills. He said the hospital social worker helped outline options. And, he had "very good insurance," but there were still a lot of deductibles and other costs.

"You're talking about over $1 million on the first surgery," Chris said. "Insurance did cover most of it, but a lot of it took its toll on us financially. But, what are you going to do? It's your son you have no choice."

Blake was approved for Medicaid coverage which provided the family a safety net for expensive procedures like dental work. But, several months ago he was dropped from Medicaid, Adrienne still doesn't know why.

"Everybody puts the blame on somebody else. I had one phone number leading to another phone number never get an answer why Blake was dropped," Adrienne said.

And that is why the Wilson family, a family with health insurance and with jobs, is headed to Washington to tell their story to members of Congress.

"I can talk to them all day long as a hired person from the hospital why I think it's important," said Melanie Hall, director of advocacy services at St. Joseph's Children's Hospital. But she added that the real impact comes from families that volunteer to tell members of Congress their story.

This will be the fifth year Hall has taken a family to Washington for the annual Family Advocacy days sponsored by the National Association of Children's Hospitals. Blake and his parents will meet with members of congress on Thursday.
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