Hagerstown toddler may face third heart operation next week

August 20, 2005|By Bob Maginnis

Have you ever been in an emergency room with your child? If your experience was like some that my wife and I have had, you sat there dreading what you might hear, then gasped in relief when the doctor told you your child was going to be just fine.

Now imagine going to the hospital to have your child tested, knowing the doctor might tell you that your under 2-year-old child might need heart surgery - for the third time!

That's what faces Angela and Jimmy Koontz next week when they travel to the Nemours Cardiac Center of the Alfred I. duPont Hospital for Children in Delaware, where their daughter Alivia, whose first birthday was in April, will undergo a heart catheterization.

For those who missed my earlier columns, Alivia has 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.


She has already had two surgeries, in each of which, her mother reminded me, they had to break her breast bone. They had hoped that the third operation would come when she was a little older and had gained some more weight,

Even more unnerving for these parents is the fact that Alivia's doctors disagree on the timing of this.

"Since her cardiologist is in Harrisburg (Pa.) and her surgeon is in Delaware, we can't get them together to discuss it," she said.

Mom has good reason to be nervous. With an abnormal heart and one lung that is undersized, Alivia hasn't put on pounds easily.

"She probably weighs about 16 1/2 pounds. She is walking with help, but she hasn't made any steps on her own," Angela Koontz said.

"She has started to do what I call a half crawl, but she's mostly scooting on her butt," she said.

Despite all she's been through, however, her mom says, "She's a very happy girl."

Jimmy's parents took them to Myrtle Beach, S.C., where the above photo was taken and she seemed to have a good time.

The catheterization is necessary because her heart has shifted, Angela said, and doctors want to see whether past work they've done has held up. It is not a simple procedure.

"Last time she had a catheterization done, she developed a blood clot in her leg. Hopefully, it will go a little smoother this time," she said.

If there is surgery, afterward the child will be unable to walk or crawl. And after it's no longer necessary to sedate her, her parents will spend long hours walking her around the halls of the Nemours Center, with a heart monitor attached.

Even after she recovers, Alivia faces a tough road. There are visits to the pediatrician, a physical therapist and her cardiologist in Harrisburg, Pa.

With gas inching toward $3 per gallon, it's not a happy prospect. When I first met the Koontzes, they described their ongoing struggle with insurance company paperwork and the expense of keeping the household going. They would like to say they can handle things by themselves from here on out, but the reality is that there are more bills than they can pay on Jimmy's salary alone.

"It's a struggle. If she has the surgery, Jimmy's not going to get paid the whole time we're there," Angela said.

I've asked this before and readers of The Herald-Mail have been generous, helping Jimmy buy another pickup truck at one point after a deer ran out in front of his old one.

There's still a need here. 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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