The Worst Heart Defect
Written by: Anna Jaworski

"No", I stated, to my friend’s surprise.

What is the worst heart defect to have? It is the one your child has.

At a support group meeting once in Texas, my friend and I sat around a table and spoke with some new parents. Their beautiful son was there and looked happy and healthy. I was surprised to hear the mother tearfully exclaim, “I’ll never trust statistics again! I might as well buy a lottery ticket! The chances of my son having this horrible defect were one in a million and now I wonder if I should even have another baby. I don’t trust the odds anymore. I don't trust anything.”

My friend and I sympathized with the woman and gently told her that heart defects are much more common than people think. After a while my friend asked her how many surgeries her son still needed. Both of our children had multiple surgeries.

The woman stopped crying and looked surprised. “None!” she replied, “His heart defect is fixed.” The child had had a coarctation. To her, this was the worst defect her child could have had. She knew her life would never be the same and she was grieving for the perfect baby she should have had. To this woman, a coarctation was the worst defect.

When Alex was in the hospital, I watched as a tiny baby boy was wheeled into the room directly across from Alex’s. The baby had just had open-heart surgery and when I passed his room I saw the familiar chalkboard with pictures of the heart neatly drawn and labeled. The baby had transposition of the great arteries (TGA).

I asked the intensivist how the new baby was doing. I was the only parent around. The new baby’s mother had gone home. The doctor shook his head sadly and I said, “Why is it that some babies seem to have so many things wrong with their hearts, like Alex, but do okay, and others have only one thing wrong, but suffer so much?” He replied, “Alex had TGA, too, but he had an ASD and VSD which compensated for his TGA. His heart had so many problems that some balanced each other out.” The new baby died the next morning. I’m sure his mother thought he had the worst heart defect.

During Alex’s second surgery, a young girl occupied Alex’s old room. Curious, I asked someone why the girl was there. She looked so big and healthy. “She’s twelve years old and failed her athletics physical,” I was told. “They detected a murmur.” The twelve-year-old girl was laying in the bed with her worried mother by her side. She had a hole in her heart. The mother looked totally devastated. The girl was withdrawn. How could this happen to them? They had led such a normal life! How could they be in the hospital now? The girl should have been running around a race track--not having a hole in her heart closed! Their normal life was stolen from them. Surely they thought this was the worst defect.

Not long after Alex’s last open-heart surgery a tragedy occurred at the hospital where Frank worked. His boss had a wonderful son who was an Eagle Scout and honor student. Everybody loved this polite young man. Being sixteen, his mother allowed him to spend the weekend with a friend out of town because there was a big festival occurring. Somehow, during the festival the boy walked away from the crowd, had a heart attack and passed away. Although he had played sports all his life, a problem had never been detected. The autopsy revealed an enlarged heart. I’m sure his mother feels that her son's heart defect is the worst defect.

Any heart defect can be the "worst" defect--it all depends on the lives changed by the defect. For all of us, this is the worst thing to happen to us. Our lives are changed forever; nothing will be the same.

But for as terrible as these defects are, they make us so much stronger. And for those of us lucky enough to have Internet access, we have found a new family. Some of us even develop a new mission in life. Every cloud has a silver lining.

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