Modern medicine is impressive. The inspirational stories of people surviving insurmountable odds and living to tell the tale; the athletes breaking records with prosthetic limbs; babies being born with IVF, the list goes on. The tales and stories of poor prognosis turned inspiring life are many and beautiful. And though these things are miraculous, I viewed them with a fleeting sense of wonder and forgot about them almost as fast as I learned of them. While I valued these amazing stories and may have even found myself clicking a “donate” button on a story that I found particularly compelling, I would not think much of it beyond that moment. This was a story happening in some place on the other side of the state, the country, or the world. But, as I sat in a sterile room lit with unflattering florescent lights listening to a cardiologist tell me my daughter was to be born with a severe heart defect, I found myself thinking of all the stories I had read before. I thought about all of the odds that were stacked against these amazing humans and somehow they still thrived.

Ellie would be born with unbalanced atrioventricular canal defect. The right side of her heart did not develop and there were no chambers within her heart. She has only an open left ventricle with a common valve. The simplest terms that this can be put into is that she only has half of a heart. The fact that she was alive at all was incredible to me; that the small baby in my body was still able to be alive with such a profound malformation of such a vital organ was simply astonishing to me.

My wonder would grow as the cardiologist in front of me began laying out the surgical plan for my daughter. He would tell me about a series of surgeries that were designed to reduce the amount of work expected of Ellie’s heart and would help her body to function without the benefit of a whole and complete heart. He spoke about redirecting blood flow; about typical oxygenation being in the high 80s. He spoke about making my daughter’s imperfect heart still work well enough for her to live a beautiful and inspirational life.

There are no words I can use to describe what this experience has been like. I can only say that it has really changed the way that I think about life on real, fundamental levels. I used to live in the world I spoke of before- the world where terrible things happen to other people. I would empathize with their stories and maybe even share an article or make a donation, but I didn’t believe in any real way that bad things could happen to me and those I love. But something devastating and life changing did happen to me and someone I love, and it made me more empathetic, more compassionate, and more wary of the world. I find myself fully engaging in the lives and stories of others in a way that I would not have been capable of before. This is the gift of Ellie’s diagnosis. She has forever changed me as a mother and as a human.

Ellie is a beautiful soul. If you ever meet her, you will notice a few things about her initially. 1. She knows no strangers. To Ellie, every new person is just another friend whos name she hasn’t yet learned. 2. She loves cats and animals. She will almost definitely have a stuffed animal with her and she will tell you its life story immediately. 3. She cares deeply about others. When you are with Ellie, you are her top priority. Her diagnosis is not something you will see. You might wonder if her lips are a bit blue or if its just the light casting shadows, but otherwise, her diagnosis is below the surface. Her diagnosis is an important part of her, but it does not define her.

As with all my Heart Month posts, I would like to encourage you to read about other people with heart conditions, but more than that, I would like to encourage you to really look at your fellow humans. We all have stories. We are all living the life we are given the best way we know how. I would encourage you to find more tolerance and love for those around you and remember how precious the beating in your chest truly is, for if you prick us, do we not bleed?

www.conqueringchd.org

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