Lauren Gray our CHD Awareness Chair is Surviving CHD

December 30, 2012
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Lauren Gray MLH Survivng CHDYou can’t tell it to look at me, but I have had 4 bouts of pneumonia, 5 catheterizations, 2 open heart surgeries, numerous blood transfusions, countless iv’s, ekg’s, echocardiograms, x-rays, trips to the cardiologist or ER and have taken a plethora of antibiotics in my 40 years. I’ve had many otherwise minor health issues compounded by my heart defect but, the reality is that I am one of the lucky ones.

I was born with Tetralogy of Fallot in a rural town in North Carolina. They were not equipped to handle my condition so I was sent to a medical school in a larger town where they performed what was supposed to be a temporary repair. That temporary repair lasted for 17 years with minimal intervention. At age 17 it was determined that a more stable repair was needed. You can probably imagine that as a young teenage girl I was not exactly thrilled about having surgery. In the vainness of my youth I was far more concerned about the scar that would be left on my chest than about the extension and quality of life the surgery would produce. Plus, it wasn’t exactly my definition of how to spend a fun summer vacation. My heart was still pumping, but it was working very hard to do so. That repair has lasted 23 years. I now take a blood pressure pill and a baby aspirin. It is likely that I will need additional intervention throughout my lifetime. I have no physical limitations though I do admit that my stamina is not always up to par. I’m one of the lucky ones.

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I recently had a friend who is a heart mom ask me how I felt about my heart defect. I replied that it is part of my life, part of who I am in other words; it is my “normal”. Later I reflected a little more on her question. I missed being the fairy in the school play in the second grade because I caught a cold that went into pneumonia. I couldn’t take gymnastics class because the warm up exercise was to run laps around the gym. I was flat turned down by the coach to play flag football my junior year of high school. Looking back it was simply because the coach was not educated about heart defects and she didn’t want to take on that liability. She said that she wanted to be fair to the other students who could run in practice, but I’m one of the lucky ones.

Even though my heart has been repaired having a CHD still impacts my life more than I consciously acknowledge. Most people might carry their insurance card and driver’s license. In addition, I on the other hand never leave home without a copy of my EKG. The reason is simple. To an ER doctor or nurse unfamiliar with my defect it reads like I am having a heart attack. I have to make sure that I have health insurance at all costs. There are still a myriad of minor health challenges that I live with as a result of or in conjunction with my defect, but remember I am one of the lucky ones.

In 2007, I stopped in a restaurant for takeout and there was a local publication with an article highlighting an organization called Mended Little Hearts. When I read further about how this organization was created to help families like mine I knew that I had to be involved. There was no support group, no other kids “like me” and very limited resources or instructions for my parents.  I was amazed at the number of people almost in my back yard that had a child with a CHD. Over time I slowly discovered this whole community, the unspoken bond that they all share and how my experience could actually help others. I am now on the National Steering Committee for Mended Little Hearts as the CHD Awareness Chair. For more information about the CHD Awareness campaign or to help our please contact me at awareness@mendedlittlehearts.org.

That is how I became involved in MLH and why I feel so strongly about increasing awareness. Even today I am in awe when I learn about a child who has had 5 or more surgeries before the age of three. When a child becomes an angel it is a devastatingly sad reminder that I am one of the lucky ones. My hope is that together we make a lasting impact by bringing CHDs to the forefront so there can be more research, farther reaching support, more hope and more survivors.

 

MW, AY, LG

The lovely Lauren is on the right looking at this photo.

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