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Thursday, August 8, 2013

one in one hundred.


I haven't really posted many photos of Elliott on this blog from when he was in the hospital after surgery and frankly, it's because some of them are tough to look at. These days were not easy, and the one I've chosen above is after his ventilator was taken out, drain tubes were pulled out of his chest and his puffiness went way down. The seizure machine was unhooked. This was Elliott on a good day. Other days were not as pretty. Days I didn't even recognize my son. I look back at photos and can't believe how far my little man has come.

Some kids are not as lucky as my son. Elliott overcame some challenges, sure. He was one of the sicker kids in the unit and stayed longer after surgery than many. But really, after connecting with other heart moms across the country, I am blessed with the realization at how good we have it. We'll always have to keep an eye on Elliott's heart and his health... health is not something we can take for granted around here. That aside, some of Elliott's peers stay in the hospital longer. Months. Some of Elliott's peers have to have 3 surgeries before the age of 18 months old. Others are put on life support, listed for heart transplants, taking their last breaths before they've even begun to live and see the sunshine. I am blessed, friends. We've overcome a lot and we have a silly, smiling, 11 month and 26 day old little boy to show for it. I am blessed.

Recently, CNN Health posted an article  as well as a follow up article that shook me to my core. When I think about the doctors and nurses that took care of Elliott (and us) on our darkest days I am filled to the brim with gratitude. There is a possibility that families across the country are not receiving the same care as our family did and that knowledge just hurts my heart. Kentucky families affected by CHD are now having to second guess where they go for care after Kentucky Children's Hospital has refused to share it's mortality rates, and that just isn't acceptable. I am not certain whether there is truly malpractice or negligence going on, and there's a chance that there isn't. However, there is a transparency that should be there that certain Kentucky families feel they aren't getting, and for that reason, friends, I ask something of you.

Please, for CHD families, for Elliott, for children healthy or sick, for humanity, consider signing this petition to urge University of Kentucky Children's Hospital to share information about the infant mortality rate after surgeries performed at this hospital. This is not to name names, place blame, or point fingers. This is so CHD families in Kentucky can feel secure in the care their children are getting and make choices about where to seek care. My family is so lucky to have a hospital nearby that is famous for cardiac medicine. If only all families had the same blessing.

Congenital Heart Defects affect 1 out of 100 babies born every day. Every country, every race, every social stature, every class. Every income bracket. Every religion. It has nothing to do with lifestyle or education and in only some cases is it linked genetically. This makes it the leading birth defect in the world. There is a chance that someone you know is in some way affected by CHD. Please spread awareness. Please have heart.


1 comment:

  1. I think it is sad, especially in this day and age that transparency is not a must... I would think all people and agencies would want this... otherwise it looks like they are hiding something.

    I am so happy for you that Elliott is doing better ... those first few days/weeks... sounded scary. I am blessed with two healthy children and I cannot imagine the fear you lived (live) with...

    Your little boy is a doll, such a sweetie:)

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