It’s Awareness Day…and??

It’s Awareness Day…and??

February 14  is Congenital Heart Defect Awareness Day.  It’s also the day our 2 month old almost lost her life on the way to a hospital emergency room.  Not a great memory or reason to celebrate.  But is is a reason to share, which is what thousands of families are doing on this day. When [...]

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Finding Christmas.

Finding Christmas.

Three years ago today we spent Christmas Day at the side of our daughter Eve’s isolette in the PICU at the University of Minnesota Amplatz Children’s Hospital.  She was 13 days old.  It was the first – and likely the only time I will see Santa cry. People still comment on how horrible that must [...]

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The Birth Announcement (That We Didn’t Want to Send)

The Birth Announcement (That We Didn’t Want to Send)

Eve Isley Saarinen was born the evening of Friday, December 12th  – 6 lbs, 9 oz, 20 inches… lots of beautiful dark hair. At 2 days old, Eve was diagnosed with congenital heart disease. It’s a broad category.  Her biggest problem is a severely leaky mitral valve, which puts strain on the whole heart function, [...]

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A Fight for Newborn Hearts

A Fight for Newborn Hearts

During my most recent trip to Washington DC, I got an email from Dr. Darshak Sanghavi, the head of pediatric cardiology at UMass.  He was sending a link to an article in the New York Times titled A Mother\’s Fight for Newborn Hearts, which told the story of our baby Eve and her journey.  When [...]

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On a roll…

On a roll…

Another significant journal weighs in on pulse oximetry to help detect CCHD. Nature Reviews Cardiology: Clear benefits of pulse oximetry in neonates—one small step to improving postnatal cardiac care. The letters, emails and calls recognizing the importance of the U.S. Department of Health and Human Services decision to recommend this simple screening for all newborns [...]

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Universal Newborn Screening for Heart Defects Recommended

Universal Newborn Screening for Heart Defects Recommended

SACHDNC Meeting 9/22 Public Comments Chairman Howell, Committee Members, Thank you for allowing this participation today.  As of yesterday afternoon, the comments I had prepared have greatly changed.  We are overwhelmed by the Secretary’s positive response to this committee’s vote from one year ago to recommend newborn screening for critical congenital heart disease. In support [...]

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HHS Adopts Recommendation to Screen Newborns for Heart Defects

HHS Adopts Recommendation to Screen Newborns for Heart Defects

Word came late this afternoon that HHS Secretary Sebelius has adopted the recommendation to add Congenital Cyanotic Heart Disease to the Recommended Uniform Screening Panel.  You can see the formal newborn screening for CCHD recommendation here. This has been a long time coming.  Many good people and organizations were working toward the early detection of [...]

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Consensus – AAP, AHA, ACC Endorse Screening Newborns for Heart Defects

Consensus – AAP, AHA, ACC Endorse Screening Newborns for Heart Defects

Published in the journal Pediatrics: Endorsed by the American Academy of Pediatrics, the American Heart Association and the American College of Cardiology, a federal advisory panel recommends nationwide screening for critical congenital heart disease using pulse oximetry, a probe placed on a hand and a foot that uses a light source and sensor to measure [...]

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The Lancet: Pulse Oximetry Recommended for Newborns Before Discharge

The Lancet: Pulse Oximetry Recommended for Newborns Before Discharge

This is by far our favorite headline this year.  Please review the full article here: Pulse ox_Lancet2011_Aug4 And share it with your circles of influence – hospitals, department of health officials, legislative offices, associations.  This is an incredibly powerful endorsement of newborn screening for heart defects.  Use it.  Embrace it.  #1in100

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Progress.

Progress.

In the year leading up to July 19, 1955, C. Walton Lillehei and colleagues operated upon 45 infants and children with previously uncorrectable cardiac anomalies using cross-circulation with a human donor.  Actually, my grandmother, Anna, was the third adult patient he operated on using his revolutionary bypass techniques. In that spirit, I wanted to share [...]

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