Babys First Year Blog
Cora’s Story and Newborn Screening
Cora Mae McCormick
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!
photo: Corasstory.org
Planning to vaccinate your baby? Check out these 10 Recommended Vaccinations
Go Back To Babys First Year Blog
6 Comments
Sarah commented on Aug 09 11 at 9:48 amIf you do homebirth or leave the hospital early, is this something you can do at a Dr’s office? Does it require blood draw? How long does it take to do the pulse oximetey testing?
annamarie saarinen commented on Aug 09 11 at 12:48 pmThank you to Kristine for all her important work – the momentum is shifting toward pulse oximetry as a routine standard of care, but it will take time. Ask for it. It is simple, non-invasive (no blood draw), just a small cloth wrap around your baby’s foot (or foot and hand) where a little red beam of light measures the oxygen in her blood. It only takes a few minutes, and if the number is below a certain threshhold, it can be a leading indicator of a heart problem, or other respiratory ailment that needs attention. You can request it in the pediatrician’s office, but be aware that some offices don’t have pulse oximeters handy. And you won’t want to wait until the one-week well visit to do it. Best to have this check done at 24-48 hours after birth. For our daughter, it would have been too late. She was in heart failure at 48 hours old. Fortunately, we were able to get a diagnosis just before we were set to leave the hospital. For babies like Cora, after discharge is too late. You can find more info on what pulse oximetry is on the advocacy site and on 1in100.org. Annamarie, Eve’s heart mom
renee commented on Aug 09 11 at 1:16 pmThis is truly tragic. However, I hope you weren’t implying that 1 in 100 babies dies of congenital heart defects. The infant mortality rate from all causes (including preterm birth and SIDS) is about 6.8 per 1,000, or less than 1 percent. Maybe 1 in 100 babies has a congenital heart defect, which may not be fatal?
Kristine commented on Aug 09 11 at 2:21 pmRenee- Exactly, one in 100 are born with a heart defect, some of them really minor. And 95 percent of those live to adulthood. However, CHD is one of the leading causes of newborn death, killing more babies than SIDS or accidents. Prematurity is the top cause of death.
Danielle625 commented on Aug 09 11 at 2:28 pm@Renee- The 1 in 100 is the amount of babies born with a form of congenital heart defect.
Danielle Wilson commented on Aug 09 11 at 8:59 pmI am sorry for the loss of your daughter and have experienced the same thing myself and belong to the advocacy groups you refer to in your post.
My son was born with a congenital defect called a co arctation of the aorta and was in heart failure by the time he was 5 days old. He has had three corrective surgeries since then to correct the defects he was born with.
God Bless you for what you continue to do for advocacy and I hope no other mother has to experience what you or I have been through. The test is so simple, painless and in expensive. It is a MUST IMO for all newborns!!!!
Add your take:
Note: Babble is a supportive, diverse community. We encourage a range of opinions,
but any unduly hostile comments will be removed.
Comments are delayed up to 15 minutes
Lauren Jimeson 
Lauren Hartmann 
Emily Elling 
Meredith Carroll 
Emily Malone 
Molly Thornberg 
Selena Burgess 
Casey Mullins 
Madeline Petersen 
The Walt Disney Company supports Babble as a platform dedicated to honest, engaged, informed, intelligent and open conversation about parenting. However, the opinions expressed on this site are those of individual parents/writers and do not reflect the views of Disney. In addition, content provided on this site is for entertainment or informational purposes only and should not be construed as medical advice, diagnosis, treatment, or safety advice.
6