Cora’s StoryThe Need for Heart Defect Screening

Kristine Brite McCormick

www.corasstory.org

Cora’s Story: Full of Hope, But Sad

Easter Sunday, 2009Easter bunny brings a huge surprise!

Pregnancy with Cora

• Prenatal care started right away. Took prenatal vitamins.

• Ultrasound and any prenatal screening/tests were all normal.

Baby Shower, Fall 2009

From Day One, Cora Was Loved

Cora’s Birthday

• Nines on both Apgar’s.

• Born vaginally about 22 hours after water broke.

• Seemed healthy.

Shortly After Birth

Cora’s nurse was the lead nurse of the unit. Cora received excellent care.

Cora Was Asymptomatic

Seemed Healthy, Autopsy Reports a Murmur Present at Birth

Cora’s Last Night

That Night

Cora dies suddenly.

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.

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.

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.

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.

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.

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).

Pulse Ox Advocacy• Parents have driven heart defect screening

in newborn advocacy.

• Started www.pulseoxadvocacy.com as a place for advocates to find information.

Nurses and Pulse Ox Advocacy• National Association of Neonatal Nurses

• http://www.nann.org/advocacy/agenda/universal-newborn-screening-for-congenital-heart-disease.html

• Suggest partnering with parent advocates; write to legislators

More InformationCora’s Story: www.corasstory.org

Pulse Ox Advocacy: www.pulseoxadvocacy.com

Kristine’s Email: kristine@corasstory.org

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