Sunday, July 24, 2011

Honor Corbin and Save a Life: Guest Post from Ruth Caruthers


We are on vacation this week with very limited Internet access but not to worry… I have something very special planned. My friend Ruth Caruthers has kindly agreed to guest post today.

Since getting Bean’s Williams syndrome diagnosis, I have met many wonderful WS parents with compelling stories and compassionate hearts. I have been touched by so many of their stories but none more than Ruth and her sweet little Corbin. Corbin’s life was short but he inspired so many and Ruth is now an amazing advocate for children with congenital heart defects.

Please read this very important post from Ruth and share it with everyone you know. It may save your child’s life - or a child you know and love. Then, please go read Ruth’s story at www.thecorbinstory.blogspot.com and www.life-afterloss.blogspot.com

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Pulse Ox.

Many people have had this done but don’t know what it means. To me it means saving a life.
Pulse Oximetry is a simple, non-invasive procedure that measures the percentage of oxygen in the blood by placing a band around the foot or hand with a red sensor. The sensor beams light through the blood and can measure the amount of oxygen. If you have been admitted to the hospital for any reason, they have done this test on you. Remember the plastic clip they put on the end of your finger? That’s pulse ox!
What you may not know is that pulse ox can be used to detect heart defects in newborns. Congenital heart defects are the most common defect in newborns and affect about 1 in 100 babies. (https://www.facebook.com/#!/1in100 ) Although they are so common, only three states are required to test for heart defects at birth, Indiana being the most recent thanks to efforts by Kristine McCormick (www.pulseoxadvocacy.com )To see if you state is one of them, visit (http://www.cchdscreeningmap.com/ )

Heart defects range from a mild murmur to serious deformities and complications that are life threatening. Pulse ox can detect most heart defects because blood flow and oxygen percentage are affected. If the oxygen levels in a baby are less than 95%, the baby will be tested again and checked for heart defects. Hospitals run a wide variety of tests on newborns ( http://genes-r-us.uthscsa.edu/nbsdisorders.pdf) but still do not test for the most common defect out there. It is my goal, and others, to change that.
My personal reason for doing this is my son Corbin. He was born with Williams Syndrome (http://www.williams-syndrome.org/what-is-williams-syndrome ) which caused serious heart defects. He was five days old when we found out he had in interrupted aortic arch and that he needed to be put on medication to keep his aorta open or he would die. For the next 81 days, he would be in the hospital fighting for his life. He underwent three heart surgeries, the first at 9 days old, to try and fix his heart. He touched a lot of people during his stay, but in the end, God took him home. He is no longer in pain and his heart is healed but I miss him every day.(http://www.thecorbinstory.blogspot.com)
 I decided, not long after he passed, that if I was chosen to be the mother of an angel baby, that Corbin would not die in vain. I decided from that moment on I would try to make in difference in Corbin’s memory. It was then I started advocating for pulse ox screening in hospitals. My son was not screened at birth and he is not the only one. Many children go home untested and for some, it is too late. (http://www.corasstory.org/ ) I am fighting for every child out there, that they may have the chance to live. No mother should have to bury her child.
If you want to help, here (http://pulseoxadvocacy.com/efforts-by-state/ ) is a link listing the advocates for Pulse Ox by state, through Facebook. Feel free to contact them and ask if you can join the cause (we are also on Twitter! @pulseoxwv.) Another way you can help is simply by spreading the word! Also if you are pregnant, or a new mother to a little one, ask your doctor or pediatrician to run a pulse ox test on your baby. It’s cheap, painless, and takes seconds. Most importantly, it saves lives. 

4 comments:

  1. Ruth and Corbin are such gifts to not only the CHD community, but mothers and babies everywhere.

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  2. Thanks Ruth (and Heather) for posting about this. Pulse oximetry was how we found out about Dallin's heart problem at 3 weeks old because his pediatrician was concerned that he looked blue. I'm glad that I live in Indiana and that our new baby-to-be will be tested at birth.

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  3. Kristine - you are so right! I am so fortunate to have Ruth and Corbin in my life!

    Sheri- you are so fortunate to live in a state with mandated Pulse Ox! And it's great that your new one will be tested - with hopefully no cause for concern :)

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  4. I'm way behind (and so, glad you're not too far ahead of me).

    Thank you for the insight. As I read this, I thought about when Mad was in NICU. Of course she had it done, but I never realized Fynnie hadn't. Something to add to the list for Tuesday's (one year!) appointment.

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