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Sunday, May 2, 2010

Early Screening

Ahh the power of Twitter. I have a lot of people ask my what the point of Twitter is or why I use it. Used properly, it can be a powerful networking tool. I have met so many fabulous people there. From other heart parents to advocates to organizations spreading the word on things that interest us.

I was led to a video from @Babyheart_org on Twitter which hit close to my own heart. As much as I am an advocate for organ donation and congenital heart defect awareness... from day one of this journey I have felt strongly about early screening. It might be because Gabriella's condition is a silent killer, and typically presents itself upon sudden cardiac death. Cardiomyopathy, a large percentage of the time, the diagnosis when you hear about a teenage basketball player sudden dying on the court, or a college football player dying in practice.

The video I mentioned is about a 17 year old, completely healthy football player who collapsed and died from sudden cardiac death. Though his condition was found to be mitral valve prolapse (one of Gabriella's defects), it still could have been treated and his life spared had early screening been a requirement. Please watch his amazing father here: Detecting & Preventing Heart Defects

I know God is preparing me for the future. There is so much I want to do, like volunteer with Make a Wish, train Gabriella's future puppy to be a therapy dog, help with the new support groups at the new transplant center here in Phoenix that the coordinator contacted me about. But I have also been gathering links, studies and information to use in my proposal to the school systems. I hope to be able to take information and a proposal to the district offices in Chandler, Gilbert, Mesa and wherever else God leads me, to require mandatory heart screening prior to children participating in gym class in elementary school, or at minimum before playing organized school sports.

In Gabriella's case, a simple innocent murmur, followed up by a 5 minute EKG, detected there was a problem... and we were blessed by God to even be sent for that. Granted we would have found out when she had her stroke, but if she had not had the stroke we wouldn't have found it until it was too late.

If we can get this to be a mandatory test done at the same time as physicals required to enter school, we can save the lives of children who are going undiagnosed. And like the video said, and Gabriella's 4 years of life prior to diagnosis proves, there aren't always symptoms. In small strides, and paired with what Kristine, Cora's mom, is doing for early pulse oxcimetry screening, and we can seriously impact the world of Congenital Heart Defects.

1 comment:

Paula said...

I hope that you are able to get schools to do mandatory testing. From such a seemingly insignificant exam, so many young lives could be saved.

I share your passion for early screening, though it is a different kind that's touched our lives. Anna's MSUD was diagnosed by newborn screening, and at the time of her birth only 21 states even screened for it. If she hadn't been born here in Michigan, it is likely she wouldn't have lived past 2 weeks old.