Thursday, February 10, 2011

Wishing for Spring...kind of

Will Spring ever get here? We got lucky and it didn't snow, but it's still super cold and there is still over an inch of ice covering everything. While I can't wait for the warmth that comes with Spring, I get a little anxious when I think about it. You see, Scarlett is very likely having another surgery then. The scar tissue from her original surgery is starting to cause adverse pressure in her heart and pulmonary artery, so they are going to have to go in and shave away the problem tissue. It means another open heart surgery. We take her to St. Louis Children's Hospital (one of the best in the country) and her surgeon is highly skilled and one of the best in the country. I know that she will be in good hands, but it doesn't keep me from worrying. From laying in bed awake at night, unable to sleep because I dread the moment that I have to hand my child to the nurse, so they can take her through those silver double doors, away from me and under the knife. I don't think there is anything worse than that moment that they take her away from me. The other part that I hate (and fear) is when she is sedated. It is so scary to see her so pale and lifeless. No parent should have to go through this. Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. (source) Did you know that 1 in every 100 children are born with a congenital heart defect? Did you know that the majority of CHDs occur for unknown reasons. As in, there isn't enough research funding to discover why they happen. CHD research gets around 1/10th of the funding of pediatric cancer research, yet only 1 in every 15,000 children is diagnosed with cancer. I'm not trying to be negative towards cancer patients, I just think this is a little crazy? Here's something else I wanted to share (from Facebook): The painful heel prick test that is standard for ALL newborns, checks for Phenylketonuria, affecting 1 out of 10,000 to 15,000 babies. Congenital Heart Defects are more lethal and afflict 1 in 100 babies, yet the simple, non-invasive, non-painful diagnostic tool, the Pulse Oximeter, which can help detect most CHDs, lies unused in most nurseries. I promise I'm not trying to beat you all in the head with this, and I know it is not the most cheerful subject, but you need to be aware. CHD needs more awareness and funding, so we can save babies and their families the trauma of an undiagnosed (possibly lethal) condition. So we can find the causes and prevent these from occurring. 

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Come back tomorrow for Favorite Finds Friday!

1 comment:

  1. Since Scarlett was diagnosed, then when Madison was diagnosed, and especially when Emily was diagnosed...I can't for the life of me understand why expectant moms aren't made more aware of Congenital Heart Defects and the symptoms they will cause! I don't get the research dollar discrepensy either. It is a sad, terrible thing to face. Thank you for helping spread awareness! No one should have to hear the words "I am sorry, but their is something wrong with your baby's heart" again!!!


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