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A Mom's Public Comment to the SACHDNC

• February 10, 2012 at 10:02pm by Kristine Brite McCormick  |  0 comments

  At each Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children meeting, there is an opportunity for members of the public to share their thoughts and experiences about newborn screening. This past January Ms. Kristine Brite McCormick, one of our Challenge Award recipients, was present to share the story of her daughter Cora. Thank you, Kristine, for your strength in sharing Cora’s story and your dedication to the newborn screening community. This is Kristine’s public comment to the committee discussing the importance of critical congenital heart disease screening. To learn more about Kristine's journey and advocacy work you can visit her blog.

   

  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. 

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