It Was a Very Good Week

Published on Tuesday, February 16, 2016 by Katherine

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“But is an anomalous right coronary artery hereditary?” “Could my other children have an anomalous RCA?” “What do you know about anomalous right coronary arteries running in the family?”

I was beginning to sound like a broken record. Yet no one had an answer for me. Between the surgeons, the cardiologists, the nurses, the pediatricians, the people in genetics, not a single person was able to tell me if my two other children could have the same problem my oldest had.

Until last week.

Thanks to an amazing pediatrician and an equally wonderful cardiologist, I was able to breathe a sigh of relief within the course of only five days. Both of my younger children have perfectly developed hearts.

Our cardiologist was extremely knowledgeable about anomalous RCA’s and the current courses of treatment used for children with this problem. Children’s Hospital of Philadelphia is keeping a patient registry to study children like my oldest son. Their website explains:

“Researchers from The Children’s Hospital of Philadelphia helped to establish the Congenital Heart Surgeons’ Society’s multi-institutional registry of children and young adults with anomalous aortic origin of a coronary artery (AAOCA). AAOCA is a rare heart anomaly that is associated with an increased risk of sudden death. The purpose of the registry is to study outcomes, course of the disease, and risk of sudden death in children with AAOCA.”

When this problem was found in children, surgery was usually performed – even on kids without symptoms. Some of these kids then developed problems following the surgery. Our cardiologist explained that now they often follow these children rather than fix the problem. My response? “Well that wouldn’t have worked with MY child!”

Cardiac arrest, no symptoms… death if his friend had not performed CPR on the spot before the paramedics could paddle him. Indeed, “watching” would not have worked. Yet with some children, surgery would have caused further issues. Thus the need for a patient registry.

During this momentous week, I lost my wallet containing my driver’s license, my debit card, credit card and insurance cards.

As the reality of this began to sink in and my stress level increased by about a million, my oldest stuck his head in my room and smiled. “Mom, remember how I used to be tired after work and took naps a lot? I just worked a double and feel FINE. The doctor told me that would happen after surgery. I have so much more energy.”

How could I let my problem take over my mood after such a momentous week filled with good news?

The following day I received a phone call. “Don’t worry, I have good news. My husband found your cards.”

It was a very good week indeed.