Support Cora’s Story: Take Action on Pulse Oximetry Advocacy

Cora's Photo Used With The Permission of Kristine Brite McCormick. (Please do not reprint this photo without obtaining Kristine's permission.)

Kristine Brite McCormick was a 2010 Bloganthropy Award Finalist and is a current member of the Bloganthropy Blogger Advisory Board. Please read this guest post by Kristine and support her efforts if you can by writing about this issue, contacting your state representatives and using your influence as a blogger to inspire others.

It’s a simple test. A fifth vital sign. Inexpensive. Quick. Non-invasive. Like taking a baby’s temperature.

It might have saved my daughter’s life.

But, we’ll never know because Cora wasn’t screened with pulse oximetry before leaving the hospitals. Hospitals don’t routinely use pulse oximetry on infants that appear healthy. And, Cora appeared healthy. She scored 9s on both her Apgar tests and was a beautiful baby.

One early morning I was feeding her and looked down after looking at my husband for just a moment. Cora was pale, limp and not breathing. Just like that, Cora was dead. Turns out she had an undetected congenital heart defect. I had never even heard of CHDs until the coroner told me. I later learned about
pulse oximetry.

I’m not a fan of interventions and interrupting important mother-baby bonding time. Pulse ox doesn’t do either. Pulse ox can be done while a mother holds the baby, and in fact is better when the baby is calm like in mom’s arms. Pulse ox can detect some of the most critical heart defects.

I wrote my State Senator and told him about Cora. After some emails back and forth, he authored a bill to make pulse oximetry standard in my home state, Indiana. The bill made it’s way out of committee and will be voted on by the full Senate in Indiana soon. I’m urging Hoosiers to help me. No mother should have gone through what I did. No mother should find out about her baby’s heart defect from the coroner. If you’re from Indiana, please consider writing your Senator. If you have friends and family from Indiana, please consider spreading this story along.

Pulse Oximetry Advocacy at the State Level

Sadly, what happened to Cora could happen to any of our children. CHD is sometimes genetic, but doesn’t run in my family. And, CHD occurs in any racial, socioeconomic  and geographical group across the nation.

Amazing efforts have taken place at the federal level thanks to so many groups, including 1in100.org, Saving Little Hearts, Mended Little Hearts, the Congenital Heart Information Network and Children’s National Hospital. In fact, recently the Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children recommended to the Department of Healthy that pulse oximetry be added to the newborn panel. The Secretary of the Department of Health hasn’t answered that recommendation, but eventually this will be implemented.

I know this is a lot to take in at once, but if we stand together, so much can be accomplished. I’d love for other people to work on legislation in other states. Currently, bills are in the works in Indiana, New Jersey, Tennessee and Missouri.

You have the opportunity to take a stand for babies. Pulse oximetry doesn’t detect every CHD, but it’s a start. And 1 in 100 babies have a CHD. CHD is the most common birth defect.

Write your local representative and ask for him or her to author a bill mandating pulse oximetry screening. For reference, attach the following links:

Children’s National Pulse Oximetry Site

The text of the federal recommendation

Research studies:

http://www.ncbi.nlm.nih.gov/pubmed/17590190

http://www.medpagetoday.com/Pediatrics/GeneralPediatrics/12397

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675337/

Pulse Oximetry Advocacy in Hospitals

If you work in a hospital or have contacts at a hospital, work on getting pulse oximetry screening for every newborn at that hospital. The screening should take place around 24 hours of life for the lowest false positive rates. The baby should also be calm. If the reading is under 95, repeating the test,  or ordering further tests like an echo-cardiogram are recommended. Several hospitals already screen newborns for congenital heart defects with pulse oximetry.

For information about protocols, visit the Children’s National Hospital pulse oximetry website.

More Information

I know I just threw a lot at you, but I also know that the Bloganthropy blogging community is full of some of the most compassionate, articulate and driven people I know. I hope that you’ll consider writing a hospital or an elected official about this.

A basic vital sign could have saved my daughter’s life. A test that costs about $1.

Should you have any questions or want more information, please don’t hesitate to email me directly, kbrite at gmail dot com. For more about pulse oximetry screening, visit Cora’s Story.

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Comments

  1. Hello there! This blog post could not be written much better!
    Looking at this article reminds me of my previous roommate!
    He always kept talking about this. I will forward this article to him.
    Pretty sure he will have a good read. Many thanks for sharing!

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