Monday, 08 February 2010
Yes, it is that time of year again where we start to see the hearts and flowers out at the stores. For the past few years, Valentine's Day has always meant a little something different around the Pig household.
As many of you know, Emily was born with a congenital heart defect and the week leading into Valentine's Day is CHD Awareness week. What many people do not realize (myself included) is that nearly twice as many children in the United States will die this year as a result of a Congenital Heart Defect than all forms of childhood cancers combined. Oddly, research funding for pediatric cancers is five times higher.
Until Emily was born I had never even given this issue any thought. I am not alone. Many people do not even realize how common CHD is and how much it can turn your world on its side. I have seen a few different sets of figures, but it is believed that 1 out of every 100-150 children will be born with a Congenital Heart Defect. If that isn't enough to give you pause, the numbers show that only 1 in every 800-1000 children will be born with Down syndrome. Yes, CHD occurs in 1 out of every 150 if we take the high numbers and yet if I asked each of you that have given birth within the past ten years if a doctor had suggested to you an issue with your child's heart I would guess that answer would be a resounding "No". If I asked the same women how many had been asked if they wanted to be tested for genetic issues such as Down syndrome, I would guess the answer would be "Yes".
I was given the option to test for Down syndrome as well as other genetic issues. I declined. I was never given the choice to test for heart issues. We underwent two very long very complex ultrasound. The second one even had the tech unable to find the fourth chamber of Em's heart. Were we taken aside at that point and explained that there might be a problem with her heart and send to a specialist for further testing? No. Another tech was called in and amazingly Em's fourth chamber was immediately found. I say amazingly because as many of you know by now, she had only three. It would be two days after her birth that we began to understand her heart was not as it should be. We were lucky, doctors were running every kind of test imaginable due to her diagnosis of Down syndrome. Many children will not have their heart issue discovered for days, months, or even years.
I have discussed many times how it felt to have to hand over my barely twelve pound eight month old to a nurse knowing that in less than an hour they would be stopping her heart to repair the holes that would some day cause her death if not repaired. I am sure I have mentioned that the tissues they were working with were thinner than tissue paper and twice as fragile. Our story was one of the happy ones. Emily is here with us, her heart shows no signs of issues, and she is turning three next month.
For every story like hers, there are stories of those that aren't so lucky. Since I have been working with different organizations, I have watched far too many children with less happy endings. A three month old little girl that never saw the outside of the hospital before her heart simply gave up, for instance. After weeks of watching doctors shock their daughter's heart each time it stopped, the parents made the gut wrenching decision that it was time to allow her to go in peace. I have thankfully never had to witness the paddles placed upon my daughter's chest, but I have spoken to others that have watched their own children. It is a terribly painful experience and not one that any parent wants to put their child through.
I can recall many days signing on to Em's carepage to check in on one of our heart friends. One particular little girl spent more than 250 days in the hospital her first year of life. She underwent three heart surgeries during that time. After the final one, she was put into a drug induced coma due to the fact that each time someone touched her, she went into cardiac arrest. The little girl eventually recovered and is now almost two and living a great life with her parents and three older sisters. Yes, a happy ending without a doubt, but no child should have to endure what she did at such a young age.
It is noted that this year, approximately 4000 babies will not see their first birthday as a result of a Congenital Heart Defect.
A very real and yet sad fact is; The American Heart Association allots only 30 cents of every dollar raised for research. Of that 30 cents only 1 cent is set aside for pediatric research. I am sad to say that the figure is actually up. A few years ago it was less than one half of one cent. 1 penny doesn't even buy you a piece of gum and yet this is the amount earmarked for research on the number one leading cause of infant deaths.
Congenital Heart Defects affect many families. Emily's estimated medical cost for the first eight months of her life were very close to the million dollar mark. Much of that (thankfully) was covered by our health insurance. I can't help but think that with more funding for research, that money would have never had to be spent. In all honesty, I would have paid billions of dollars if it meant my precious girl would be healed and come home to us, but wouldn't it be wonderful if that wasn't necessary any longer?
February 7th through 14th 2010 is Congenital Heart Defect Awareness Week. It is my hope that in my own way I have made you guys more aware. Happy Heart Week!