Heart Kid

If you feel like lobbying your congressional representatives for something this week and you're at a loss for an interesting cause, you might consider writing in for recognition of a National Congenital Heart Disease Awareness Week. Why is this such a pressing issue, you might ask? Well, in addition to the stats in the CHIN letter, it's interesting to note that heart defects are the most common type of structural birth defect, affecting 1 in every 125 newborns. And cardiologists who work with adults mostly focus on adult-onset heart disease, like that caused by high blood pressure, high cholesterol, etc. So, many adults with congenital heart defects continue to see their pediatric cardiologists because they are trained to work with congenital defects, even though their area of expertise is CHD in children.

My situation as the mom of a heart kid is different - better - than most.

I knew about Ellie's heart defect, a complete atrioventricular septal defect, before she was born. I saw it on two different fetal echocardiograms. I researched it and all the complications that could come with it, so after the second fetal echo, when we got the news that there were no additional complications (like hypoplastic left heart or a transposition of the major vessels) I was ecstatic.

Ellie saw a cardiologist and started medication long before I would have noticed symptoms otherwise. Her surgery and recovery, though earlier than we had hoped, went exceedingly well.

She is expected to have no further heart problems. She is on no medication. She can go out for whatever sports she wants to. The only things that still mark her as a heart kid are:

1. Slight mitral insufficiency ("insignificant" heart murmur)
   
2. Periodic visits to her cardiologist
   
3. Prophylactic antibiotics before any "dirty" procedure, like having her teeth cleaned at the dentist
   
4. Her scars
   
5. My scars.

Ellie hasn't had an echocardiogram or chest x-ray since right after her surgery, nearly 2 years ago, and she hasn't seen her cardiologist since early this year. She sees her cardiologist tomorrow. If everything goes well, we won't need to go back for a couple of years (and every couple of years thereafter).

As always before one of these appointments, I am worried. Very worried.

There's always the chance of an infection. Of a problem with one of her patches, or one of her surgically created valves. When you're the parent of a "heart kid," you're always thinking of these things.

And for me, whenever Ellie takes a long nap, seems unusually tired, doesn't eat well, doesn't sleep well, has circles under her eyes, doesn't gain weight rapidly, can't kick a cold, or exhibits any other normal toddler behavior, the thought flickers across my mind: is it her heart?

Is it? Hopefully we'll know tomorrow. And hopefully I won't have to gear up to visit Ellie's cardiologist again for another two years.