Cora died suddenly in December 2009 of undetected congenital heart disease, since then her mother has been a vocal leader in newborn heart screening advocacy.

1. Cora’s Story
The Need for Heart Defect Screening
Kristine Brite McCormick
www.corasstory.org

2. Cora’s Story: Full of Hope, But Sad

3. Easter Sunday, 2009
Easter bunny brings a huge surprise!

4. Pregnancy with Cora
• Prenatal care started right away. Took
prenatal vitamins.
• Ultrasound and any prenatal
screening/tests were all normal.

5. Baby Shower, Fall 2009

6. From Day One, Cora Was Loved

7. Cora’s Birthday
• Nines on both Apgar’s.
• Born vaginally about 22 hours
after water broke.
• Seemed healthy.

8. Shortly After Birth
Cora’s nurse was the lead nurse of the unit. Cora received
excellent care.

9. Cora Was Asymptomatic

10. Seemed Healthy, Autopsy Reports a Murmur
Present at Birth

11. Cora’s Last Night

12. That Night
Cora dies suddenly.

13. Diagnosis: Congenital Heart Disease
• I’d never heard the phrase. Didn’t know what
it was.
• Studied, researched. Learned about pulse
oximetry screening within a month after
Cora’s death.
• First baby screened because of Cora, 3 weeks
after her death.

14. Researching Pulse Ox
• Talked to other parent advocates.
• The Swedish study and UK study were
compelling.
• Followed national advocacy efforts;
September 2011 pulse ox added to federal
recommended uniform newborn panel.

15. How Pulse Ox Might Have Saved Cora
• Cora seems to have one of the 7 CHDs listed
as CCHD (we know she had issue with
pulmonary veins).
• After 24 hours, her defect might have caused
low sats, and further testing.
• Early intervention might have saved her life.

16. Pulse Ox Concerns from a Parent Perspective
• That parents will think a pass means no heart
defect.
• That clinicians will ignore symptoms if sats are
high.
• Opportunity for education will be missed. CHD
affects 1 in 100, pulse ox screening great to
educate parents.

17. Fall 2010
• Communicated with my legislator about the
compelling pulse ox findings.
• Shared message that it was inexpensive,
quick, painless and low-false positive
findings.
• Jan. 2011; Indiana’s pulse ox bill
introduced.

18. Indiana Pulse Ox Legislation
• Passed through committee. I testify.
• Politics get in the way.
• Bill passes into legislation as part of an
omnibus bill.
• Indiana first to pass legislation, second to
start screening (Jan. 2012).

19. Pulse Ox Advocacy
• Parents have driven heart defect screening
in newborn advocacy.
• Started www.pulseoxadvocacy.com as a
place for advocates to find information.

20. Nurses and Pulse Ox Advocacy
• National Association of Neonatal Nurses
• http://www.nann.org/advocacy/agenda/univ
ersal-newborn-screening-for-congenital-
heart-disease.html
• Suggest partnering with parent advocates;
write to legislators

21. More Information
Cora’s Story: www.corasstory.org
Pulse Ox Advocacy:
www.pulseoxadvocacy.com
Kristine’s Email: kristine@corasstory.org

22. Questions?
Don’t be shy. I love talking about Cora!