Friday, 24 October 2008

• The Accidental Activist

  I have never really thought of myself as an activist. I would hear about how difficult it could be to get some procedures covered by insurance companies or how expensive certain medications were and I would find it shocking, but it didn't stay in my mind for long.

  The days following little E's birth changed all of that. I found myself dealing with his corporate office trying to convince them to allow his sick leave to be taken in lieu of FLMA. We had planned for a few days off work financially, but we were in no way prepared for a month of unpaid leave. I suddenly had the hospital social worker's on speed dial and would call them often. I spent many hours down at my insurance companies office trying to deal with paperwork that hadn't been processed correctly. All of this was occurring while my daughter was lying in an isolate trying to get well enough to come home.

  I began to research different things regarding my daughter's medical problems. I was astounded at what I found. 90% of heart defects can be detected during a routine ultrasound. If only that were the case. Of the eight families I have met dealing with CHD, not one was detected in utero. I consider us one of the luckier families. E did not require a heart repair until she was eight months old. Four of the other families had a child undergo surgery within 48 hours of birth. Those same four children have undergone at least one follow up heart surgery with at least two of them having three or more.

  It angers me that but for the fact that E was born with Down syndrome, her heart issue might not have been discovered for months. This too often is the case with CHD. Most diagnosis are not discovered until the child has a failure to thrive and is taken back to the doctor for unknown problems. In some instances it is not even discovered at that point.

  I had two ultrasounds during my pregnancy. The second one lasted more than two hours. The tech was unable to find E's fourth chamber and finally called for assistance. In less than five minutes, the other tech "found" that missing chamber. I consider that a miracle considering that E only had three and the first tech was absolutely correct when she said it was not there. I am angry at myself for not questioning the findings of the second tech. I should have asked more questions, but at that point I was exhausted and decided that the first tech simply didn't know what she was doing. That could have been the mistake that harmed my child irreparably. E had only three chambers. There were two large  holes between the third and fourth, thus making for one large bottom chamber.

  In researching why these things are not discovered I realized that there are simply not enough funds available to accurately research the cause of CHD. For every dollar that is collected by the American Heart Association only thirty cents is alloted for research. Of that thirty cents, ONE penney is earmarked for pediatric research. CHD is the leading cause of death in infants and we get a single penney for research. This was when I realized my voice had to be heard.

  I have become very involved with the It's My Heart Foundation and will be writing about our story in the hopes that Congress will allot more funds to research concerning CHD. Click  here for more information regarding CHD. You will most likely be stunned by the numbers.

  I never started out to become an activist, but I guess that is where I ended up. We just participated in the Down syndrome Association Buddy Walk and will continue to raise money for that foundation as well. You have all heard of the accidental tourist. Just think of me as the accidental activist.

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