As family waits on surgeon's call, tiny patient turns 2

April 12, 2006|by BOB MAGINNIS

When I ask Angela Koontz how it's going, she says, "It's going." If only she were sure where her family was going and when.

Angela and her husband Jimmy are the parents of Alivia, a beautiful little Hagerstown-area girl who just turned 2. Between 2 and 3, most parents see a lot of changes in their children.

But before Alivia is 3, her parents are likely to accompany her to Delaware for a third operation to fix a rare heart defect.

Doctors at the Nemours Cardiac Center of the Alfred I. duPont Hospital for Children decided last summer to delay the surgery to allow Alivia to gain more weight.


The operation would help to correct a heart condition known as hypoplastic left heart syndrome, or HLHS. The goal of surgery done there is to enable the right side of Alivia's heart to do the work normally done by both sides.

I've written about Alivia's case since before she was born and a for a child who has gone through major surgery - twice! - she's remarkably cheerful.

"She's doing pretty good. She's a typical 2-year-old, with a typical 2-year-old's tantrums," she said.

"She's talking and walking anywhere she wants to go. She loves being outside," she said.

Since September, her mother said Alivia has gained two pounds.

"She's just hitting 20 pounds now," she said. Normal weight for a child this age is 26 to 28 pounds.

The next step in her treatment, Mrs. Koontz said, is another heart catheterization, followed by a third surgery.

This week Koontz said that they have not heard from the doctors, although the family is due to visit the cardiologist this week.

In the meantime, Alivia's parent have had to deal with the child's ear infection, followed quickly by a sinus infection.

These are serious, Koontz said, because of the fear that the infection might spread to her heart.

Asked how the family was doing financially, Koontz said that "we're really not doing the best. Jimmy figured we're paying about $2,000 per month for medication."

She said some of that is due to an insurance company rule that precluded paying for RSV, a drug that controls lung infections, past a certain age.

Jimmy, who works at Ski Liberty, was offered another job with better pay, but couldn't take it because he would lose his insurance coverage for Alivia.

Despite that, they are still upbeat, trusting in their faith to carry them through. Koontz said they've even done outreach, explaining Alivia's condition and how it's being treated.

At one event, they met some families who had been through similar situations.

"It was really nice to get to meet some of these people," she said, adding that they included a 9-year-old who had survived cardiac surgery.

In the best of all possible worlds, citizens of the richest country in the world wouldn't have to worry about how their medical bills would be covered, but that problem hasn't been solved yet and the Koontzes need some help.

Their church, Shiloh United Methodist, is collecting money to help. The address is 19731 Shiloh Church Road, Hagerstown, MD 21742.

Bob Maginnis is editorial page editor of The Herald-Mail newspapers.

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