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Baby Alivia faces another surgery next month

July 12, 2006|by BOB MAGINNIS

The smile on her tiny face is angelic, but when you see the scar peeping out of the top of her play gear, you know she's been through more than any baby should have to endure.

Her name is Alivia Koontz, a Hagerstown-area 2-year-old born with a heart condition known as hypoplastic left heart syndrome, or HLHS. She has already had two operations to allow the right side of her heart to do by itself what both sides usually do together.

After doing a heart catheterization last August, doctors at the Nemours Cardiac Center in Delaware decided to wait on the third surgery until this summer, to give Alivia time to get a little bit older and gain more weight.

Now that third surgery has been delayed yet again, so that doctors can do a procedure called an atrial septectomy on Aug. 8.

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In a July 6 e-mail, Alivia's parents, Angela and Jimmy Koontz, said that the procedure is designed to increase the blood flow to reduce the pressure in her lungs.

It's not normally a high-risk procedure, Alivia's parents said, but because her right lung is underdeveloped and her heart has shifted out of the normal position in the chest cavity, it will be more complicated.

"The blood is flowing in a different way in her heart because there's some type of blockage," Alivia's mother said.

Angela Koontz explained that Alivia's blood pressure is now too high and that without this surgery, her lungs could be damaged.

If there is a blessing here, it is that the child does not know how ill she is, or the danger she faces.

In June, just after they got the bad news, Angela and Jimmy said, "We are trying not to treat Alivia any differently, but it is hard. She has no idea that she is sick, so to speak. She is still a typical 2-year old."

For most children her age, the world is place full of wonders, where even the leaves blowing in the wind can be a fascinating sight.

So it is with Alivia, who loves being outdoors, hugging the family's 4-H goats and listening to a musical group called The Wiggles.

I asked her mother if there have been any bright moments in Alivia's life lately.

"She does so much, it's hard to remember," she said.

Then she recalled that this week they took Alivia to Rita's on Pennsylvania Avenue for a sweet treat and someone there had a dog.

"Every time the dog would bark, she would bark back. And then she saw the dog sticking its tongue, you know, to pant and she was sticking her tongue out and trying to pant," she said.

If only her parents could be so carefree. With $3-a-gallon gasoline the norm now, those trips to her cardiologist and the heart hospital in Delaware aren't cheap.

And there is the never-ending struggle to determine what is covered by insurance and what is not. One of her medications, a drug called RSV that prevents lung infections, is $1,000 per injection.

"And that's after insurance has paid their share," she said.

To help, the congregation at Shiloh United Methodist Church will hold a spaghetti dinner for Alivia on Saturday, Aug. 5, from noon until 6 p.m.

"We plan on having Alivia there the whole time so that people can meet her," her mother said.

In addition, the church's Youth Fellowship group is holding a sandwich sale, in cooperation with the folks at Boar's Head meat.

If you'd like some, please contact Jenny Belliotti at home at 301-739-2126 or on her cell phone at 301-988-2126.

If spaghetti and sandwiches aren't on your diet this motnh, please consider sending a check in care of the Shiloh United Methodist Church, 19731 Shiloh Church Road, Hagerstown, MD 21742.

The family's not asking for money. I am. Asked what people could do, Angela Koontz told me, "Just some thoughts and prayers is basically it right now."

Bob Maginnis is Opinion Page editor of The Herald-Mail.

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