Boy with heart defect speaks out for sick kids

Christine Chase, a North Charleston mother of two, was 18 weeks pregnant when she found out her son would be born with a congenital heart defect.

"Scary. That's the closest word I can use to describe how I felt all the time," said Chase, who quit her job as a pharmacy technician to care for her son. "It was devastating in the hospital. There was constant anxiety because we didn't know if he'd survive or not."

Matthew Chase was born with hypoplastic left heart syndrome, a defect meaning only his right two heart chambers formed, resulting in three open-heart surgeries by age 3, all performed at the Medical University of South Carolina Children's Hospital.

Five years later, Matthew spent the past week as an MUSC representative in Washington for the 2009 National Association of Children's Hospitals Family Advocacy Day. He met with South Carolina's U.S. Reps. Jim Clyburn and John Spratt Jr., both Democrats, Republican Henry Brown and Republican U.S. Sens. Lindsey Graham and Jim DeMint to discuss both affordable health insurance coverage and specialized, quality care for children.

"We just urged them to consider health care reform; we just have to keep on urging them," Matthew said.

"We're up here trying to make a difference, trying to help other children," John Chase, Matthew's father, said. "I just wanted to urge members of the Senate and Congress to not forget about the kids and all of the hospitals and technology and the services that they need."

Clyburn said talking with Matthew was very refreshing for him since Matthew was born with a disadvantage, yet he spends time raising money to help people less fortunate than him.

"I think it's important for children to know that whatever their obstacles are, that there are people always willing to help make their lives better," Clyburn said. "It's important for me to stay in touch with reality by interacting with families like this."

Clyburn said a draft of a bill is being worked on that will be another step toward achieving full, universal access and coverage for children.

"I believe that it will be the kind of plan that families like the Chase family will not only be able to afford, but also be able to rely upon the quality of the service," Clyburn said. "I don't think there's much question that MUSC provides quality healthcare, the question is, is it accessible and affordable for everybody?"

Christine Chase said her family never could have paid off the millions in surgery bills without the help of Medicaid.

She said every child in this country deserves to have these options.

"Children are always left out of these discussions; they don't have a voice or anyone to stand up for them," she said. "If no one can do that and give them the things they need to survive, they just aren't going to."

MUSC Children's Hospital, the only pediatric cardiology department in the state, is ranked as the nation's 19th best children's hospital for heart surgery in the nation, according to a U.S. News and World Report.