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Alivia's quest for a normal life means another operation

August 20, 2007|By BOB MAGINNIS

Alivia Koontz won't be 4 until March, but by then the Hagerstown child will have had more heart surgeries than years on this earth.

Today Alivia and her family leave the Nemours Cardiac Center of the Alfred I. Du Pont Hospital for Children in Delaware, where she had been treated for a heart condition known as hypoplastic left heart syndrome, or HLHS.

Simply put, one side of her heart is underdeveloped, which means that the other chamber has to do the work of both.

Alivia has already had three heart operations and her mother, Angela Koontz, said that on Tuesday the little one will undergo a heart catheterization.

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At that point, Koontz said, doctors will either proceed with the fourth heart surgery - or put Alivia on the list for a heart-lung transplant.

Koontz explained that Alivia will be evaluated for abnormal pressure in her heart, which is not the same as having high blood pressure.

So far, her mother says, Alivia has been a trouper, looking forward to her stay in Ronald McDonald House and to reuniting with the nurses, who her mother says Alivia loves.

Despite all that she's gone through, Alivia is a happy child, Koontz says, even though she has had ear infections, bronchitis and pneumonia recently.

Alivia's family has long been active in 4-H and the child has her own pet goat, Princess, and a cat named Dusty.

"She has a very good imagination. She loves her animals and she helps feed the goats," Koontz said.

"She loves to play dress up and play with her baby dolls. But she's still attached to her binky (blanket), but right here close to surgery, we're not going to worry about it," Koontz said.

Alivia now has a 9-month-old sister, Caitlin, and to hear her mother tell it, the two are inseparable.

"They play very well together. The one is lost without the other," she said.

Alivia helps feed her little sister and helps mom dress the baby, too, Koontz said.

Going to the hospital will be tough, Koontz said, because Alivia will need lots of attention, but Caitlin will require some time with mom and dad as well.

"We tell her (Alivia) that she has a special heart, but we know it's going to get tougher when she gets older," Koontz said.

Alivia isn't the only member of the Koontz family to suffer this year. Her father, Jimmy, has dealt with a bout of gout, also known as metabolic arthritis.

Sufferers of gout experience deposits or uric acid in their joints and the condition can be very painful.

For a while, his wife said, he couldn't even put his shoes on because his feet were so badly swollen.

Asked how she copes with her daughter's ongoing illness, Koontz said spiritual things help.

"I have strong faith and we pray. So far, things have been one miracle after another," she said.

But there have been no financial miracles, unfortunately.

Asked about the money situation, Koontz said, "It's a situation. We're fighting for every little bill, to get it covered by insurance."

Over the course of her illness, Alivia's parents have met with other parents whose children have heart problems and have worked to raise money for research into heart disease.

But that doesn't mean that the Koontzes are sitting pretty, money-wise.

Her husband handles the bills, but when pressed, Koontz said that their debt now probably exceeds $10,000.

Eighty percent of the cost of the next surgery will be covered by insurance, but when a procedure costs $20,000 or more, the family's share is still a lot of money, at least to the average family.

And then there's the cost of driving to Alivia's cardiologist in Pennsylvania and traveling back and forth to the heart hospital in Delaware.

Travel isn't cheap, with gasoline close to $3 a gallon. Many have also pitched in to assist the family, but a few more dollars wouldn't hurt, either.

If you can help, consider sending a check to Shiloh United Methodist Church, 19731 Shiloh Church Road, Hagerstown, MD 21742.

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

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