I met Kristine Brite McCormick almost two years ago on Twitter. I just really joined around the time she gave birth, then quickly and very unexpectedly lost her newborn daughter to an undetected Congenital Heart Defect.
I never had heard of it myself, but 1 out of 100 babies are impacted by this in the United States. That is a lot of babies!
In the loss of her daughter, it helped Kristine to become an advocate for stricter testing including the newborn Pulse Ox, or Pulse Oximetry testing on all newborns.
I asked Kristine to write something to parents, that we could share:
I have to admit, I found the newborn screening my daughter went through a bit of a nuisance. I didn’t want her dragged down to the nursery. I wanted to cuddle with her in my room. I didn’t want to wait to leave the hospital late at night to wait for the 48 mark for testing. I wanted to take my newborn out into the afternoon sun.
Then five days later, everything changed. Soon, I’d be pushing for more screening. Soon, I’d realize why screening mattered.
My 5-day-old daughter, Cora, weighed a healthy 8 lbs 10 oz at birth. She was given a clean bill of health. One early morning, I was nursing her and looked up for a split second. I looked back down and she was a sickly gray color, not breathing and limp. We rushed her to emergency room, but it was too late.
We found out a few days later she had an undetected congenital heart defect that resulted in her death. My husband and I had never heard the phrase “congenital heart” much less known Cora’s heart was broken.
I went on a quest to find out what happened and how I could save other parents this pain. I learned about a new screening showing promise—pulse oximetry. It’s a simple, cheap and painless monitoring. It measures oxygen saturation, which can be indicative of a heart problem. Cora’s defect probably would have made her oxygen low, and furthering testing might have saved Cora’s life.
I worked with Indiana state Senator Brent Waltz to introduce a pulse ox bill here. Eventually, pulse oximetry screening legislation passed. Starting January 2010, every newborn in Indiana will be screened. New Jersey also passed legislation and babies will be screened there later this year.
Pulse oximetry screening doesn’t detect every heart defect, but a recent study showed up to 75 percent of the most lethal problems could be found this way.
It’s one step on the path to making sure what happened to Cora doesn’t happen again. CHD isn’t usually genetic. The cause isn’t known. Any baby can be born with a broken heart, so it’s something that every mother should be aware of.
As mothers, it’s up to us to demand that our babies are screened after 24 hours of life and reach out to policy makers urging them to mandate this type of easy screening. I’ve started a website reaching out to advocates in other states with resources and research at http://www.pulseoxadvocacy.com
If you’d like to read more about Cora, you can read Cora’s Story at http://www.corasstoryblog.com.
Thank you to Kristine for doing the amazing work she is, and helping to save lives every day!
Please take the time to have your newborns screened!
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