Over the past two years--largely because of parental groups like 1in100 and a whole lot of work and meetings by probably hundreds of people--screening for the condition that stole Cora's young life was recommended federally.
The Secretary's Advisory Committee on Heritable Diseases in Newborn and Children (often shortened to SACHDNC) went through an extensive process to add pulse oximetry to their recommended newborn panel. This recommendation was huge, but now it's up to the state's to follow through. Not every state screens for every condition, as you can check at Save Babies Through Screening Foundation.
Financially--and emotionally--those meetings were out of reach for me. But, today, I got to stand in front of the committee and provide comments both thanking the committee for their efforts and gently nudging for more work on the state level. Every baby needs screened with pulse oximetry.
I thought a lot about the hundreds of CHD families I've gotten to know through this. I thought especially about those mamas that found out from the coroner their child died of an undetected congenital heart defect.
I'm not one for a lot of superstition. I don't really think about Cora as being here in any entity.
Today, in that room, I felt her. Her beauty and love do remain. She was close.
My testimony:
"Dr. Bocchini and ladies and gentlemen of the committee:
It’s an honor to stand in front of you today and personally
thank you for your diligence, thoroughness and swiftness in recommending
screening for critical congenital heart disease to the universal newborn panel.
I’d especially like to thank Dr. Rodney
Howell for his leadership.
My name is Kristine McCormick. I’m mom to Cora. I gave birth
to her in November 2009 after a healthy and happy pregnancy. She was the
picture of good health, or so we thought.
A few days after bringing her home, I was feeding her. I
looked up for a second, looked back down and she wasn’t breathing. She was
gray. She was pale. We jumped into action, calling 911 and running to the car
to drive her to our small community hospital. It was too late. Cora was dead. My
entire world changed in that instant.
We found out from the coroner and later the autopsy report
that she had CHD—problems with her pulmonary veins including suspected
pulmonary vein stenosis. I didn’t even know what CHD was, much less have any
idea that my daughter was born with a heart defect.
Now, a week doesn’t go by that I’m not contacted by another
mom, dad or friend of a newborn that died at home suddenly and unexpectedly
from undetected CCHD. Babies like Veronica, Max, Sadie, Luke, Nora, Harlow and
sadly the list goes on.
I commend this committee for its work so far and look
forward to the day every baby is screened for CCHD with pulse oximetry before
leaving the hospital. I’m impressed by the efforts in individual states, like
my home state—Indiana—where every baby is screened for CCHD before leaving the
hospital. Still that list of babies lost grows and will continue to do so until
every baby in every state is screened with pulse oximetry. No parent should
find out about their baby’s heart defect from the coroner. Thank you."
