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What A Year!

  • Wow, what a year!

    Since I joined the Taskforce last January, I have met some amazing people and have had the opportunity to travel and witness newborn screening history.

    I didn't know much at all about newborn screening before I joined the taskforce. In fact, the only education I had coming into the group was everything I had learned while my son Corbin was in the hospital for heart surgery. I could say that I basically took Cardiology 101 while at WVU Children's hospital, but I really didn't know about the heel stick or what newborn screening involved.

    I knew that 1 in 100 babies are born with heart defects, but I didn't know that a simple heel prick could screen your baby for up to 60 different disorders. I knew that pulse ox can detect heart defects, but I didn't know that my hospital only screens for 29 disorders and that I can request an extended screening panel. It's almost shocking how little parents know about newborn screening and the tests that are saving lives every single day.

    In this past year, I have learned that newborn screening is so much more then just a heel stick, it it a life saving screening. I remember the day my first born had his heel pricked, oh how he cried as they took the blood and I cried too, but you know something? He stopped crying. He forgot that little prick and he has grown into a talkative, smart, blonde little 3 year old. I didn't know what that blood spot was for or just how many disorders they tested for, but I do now and I am spreading that knowledge with as many parents as I can.

    I had the honor of speaking during a newborn class at our local hospital. I was able to get up in front of expecting parents and talk about newborn screening, pulse ox and heart defects. I wrote before and after questions, and while looking at the answers, I saw that a high majority of those parents didn't know what newborn screening was. I wasn't shocked, but I was sad. I was sad because it seems most parents go through such an important and life changing part of their journey- having a child, but yet they aren't educated about something so incredibly important- newborn screening.

    During an interview I had with Baby's First Test, I spoke of how when a woman is pregnant, we watch the movies, read the books, the magazines, and STUDY on pregnancy, but we still don't touch on the most important part of having a baby and that is their HEALTH. After my journey with Corbin and after losing him to the most common birth defect, I stopped caring about nursery colors or which crib set matches the curtains, and I started caring about those tests: the heel prick, the hearing test, and pulse ox; those tests that are here and are practiced with our most valuable possesions in mind: our children. Having a child is such a momumental part of someone's life, it can literally mean life or death if someone is uneducated.

    In conclusion, I have learned life saving facts and I will continue to spread that education with parents for the rest of my life. I have found my passion in life and that is advocacy. Advocacy for newborn screening and pulse ox. Although my son is not in this world any longer, his legacy lives on through my newfound passion and for that, I am proud.

    Thank you to Baby's First Test for the new friends, wonderful memories, and life saving education.

    1 Comment

    Ruth, so proud to have gotten to spend this year on the task force with you... what a year! You are amazing and I am so glad to have met you!

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