What's in a name?

There has been a lot of discussion around labels and how helpful they are, and the CHD community is not exempt. I have always been aware that I have a label, and it has affected my life.

As I said earlier, I was diagnosed at birth in 1983. Many doctors today are still rather uninformed about Ebstein's Anomaly, and I can only imagine what it was like then. I hear horror stories about doctors recommending termination of a pregnancy if the baby has EA, and new mothers are still on occasion told that their babies probably won't make it into adulthood, based purely on the EA diagnosis. Although this can be true, the medical literature that I've seen indicates that until the baby is born they can't actually determine exactly how severe it is. When I was pregnant I spent hours researching, as I was told that I had a slightly higher chance of my baby having EA. I had a number of people - including friends - who were shocked when I said that I wouldn't terminate my pregnancy if my baby had EA, which I found offensive on so many levels. It is a very personal decision, but I feel that in my case it would be the wrong one. I felt as though they were telling me that my life wasn't worth living - after all, I have the same defect. It was frustrating to explain that I was researching so I was prepared if my baby did have EA. Not so I could make a tough decision. But I digress.

I was really lucky with my label. I needed it for certain aspects of my life, and not just the medical side. It helped me understand why I couldn't keep up with the other kids in school sometimes. It also helped me see doctors and get test results ASAP. But the cardiologist who labelled me also gave my mother very clear instructions - I would know my own limits.  Let me decide when enough is enough. This is where the real issue with labels comes in, in my opinion. 

In telling my mother that I would know my own limits, my cardiologist ensured I would live a normal life. Looking back I'm not sure how my mother dealt so calmly with everything. We lived in rural Nova Scotia until I was 10 - about a half hour away from the hospital in good weather.  Never once was I told I couldn't do something because of my EA (although I have a sneaking suspicion that I couldn't take swimming lessons because of it and not because it was in the ocean like my mother always said). I played outside for hours on end. I ran as much as I could. When we moved to BC, I played badminton, swam, rollerbladed, and did all the other things that kids do. When I got tired, I'd stop. I always knew my limit, and thanks to my cardiologist, I was the one who got to decide what was enough.  My mother does readily admit that it was hard. A few days ago she told me that when I was playing outside there was always someone actively watching me - just in case. This came as a surprise to me. I never felt as though they were watching me. Never once did I feel as though I was being either monitored or restrained in anything (reasonable) I was doing. Because of this, I got to live a normal life, and feel like a normal kid for the most part.

I've never been one to sit around and have pity parties. I've never really babied myself in physical activities (granted, I have on the rare occasion during gym class pled heart problem to get out of something I really hated). I knew I was labeled, but I tend to think of my EA the same way I think of my height: it is what it is; at times inconvient, and occasionally limiting what I can do (especially when I was younger and wanted to go on the fun rides at the fair), but generally I don't wander around thinking about it.

The problem with labels is all too often people use the label as an excuse to become what is expected of them. Labels become limiting. It wasn't until I needed my first surgery I let my label limit me - and really, it wasn't the label that limited me, but my body.

So yes, I feel labels are important. It helps other people understand you or your child in many cases. People with EA can live a relatively normal life, in most cases. But the times when they can't - when they can't keep up with others, when they are stuck having heart surgery rather than enjoying life, when they have to take medications that most people don't deal with until their later years - this is when you need the label. But a label is not an excuse to not live a full life. It is not an excuse to live in a bubble and take no risks. A label is an explaination. It is not what makes a person who he or she is.

 I am not a label, or a statistic. I am a wife, mother, sister and friend who also happens to be the 1 in 200,000 who has EA. I love reading and knitting, but I also love camping, boating, hiking and swimming. So go ahead and label me. Just remember that although I have EA, I am so much more than my label.