Helping Others

I'm always inclined to share my story with anyone who will listen. It's even more wonderful when I get to share my story with a family who's dealing with CHD. At the same time, I really don't know what to say. At 27 and relatively healthy, I feel like an anomaly, an exception to the rule. Minus the 3 major surgeries and the (now) yearly visits to a cardiologist, I experience no symptoms. Not only that, I've never had any complications due to surgery (or otherwise) after the age of 2.

The best part about my experience is I've lived a "normal" life. I went to college (and grad school), got a job, and pay my own bills. Most people don't believe when I tell them I was born with a congenital heart condition. Then they see the scar. I have many but the most prominent is an 11 inch scar running right down the middle of my chest. If it were up to me, you wouldn't even see it; however, the best laid plans always have some flaws. I've had complete strangers ask me what the scar is from, then look at me like I have 2 heads when I tell them. Usually because they have no idea what a CHD actually means. I'm a very typical woman in her late 20s just trying to figure out the next 50 years of her life. And maybe that's the biggest problem.

Congenital heart defects are not very well known by the general population. Although they affect children, they certainly don't get the media or national exposure of other diseases, such as cancer. Hell, even the American Heart Association doesn't really supply much money for research for CHD. The Children's Heart Foundation is the ONLY large non-profit organization in which all the money raised goes to research for congenital heart diseases.  Worst part about that, the organization has only been in existence for 16 years. Think about that, I'm 27, there was NO non-profit organization providing money for research for CHD until I was 11 years old. I know for a fact, had I been born even let's say 5 years earlier than I was, I probably wouldn't be here today. In a lot of people's minds, I shouldn't be. I've outlived 2 pediatric cardiologists retiring (one of which I was his SECOND patient).

Anyway, I've sidetracked. I'd wager to guess that for those of you reading this post, 90% of you don't know another person who lives with CHD. That may have something to do with although it affects 1 out of every 10 children born in the US, it also kills more kids than all childhood cancers combined. Basically, up until recently (let's guesstimate and say within the last 5 years) children born with this disease weren't given that high of a survival rate. Hell, when I made it to 7 doctors were perplexed. At 13 (at my Bat Mitzvah) my parents threw a giant party for me because well... they could. Little did they know that 8 months from April, 1998 I'd have my 3rd surgery and finally live with a pulmonary valve.  By the way, I've had that same valve since, and it's been 13 years. Yep, I've finally gotten to the point where I've lived almost the same number of years with a pulmonary valve than I did without one.

So back to the point of this post, what do I say to these parents (and their children) who live everyday dealing with this illness? Well, I guess, something like this: I'm lucky, really lucky. And there's not a day that goes by that I don't remind myself of that fact.