1in100

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 [...]

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, [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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

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 [...]

June 29, 2011 The Honorable Kathleen Sebelius Secretary, U.S. Department of Health and Human Services 200 Independence Avenue, SW Washington, DC 20201 RE: Recommendation for Newborn Screening for Critical Congenital Heart Disease Secretary Sebelius, Please accept this note of thanks again for your diligence – and that of your committees – in evaluating the recommendation [...]

• "These are not isolated incidents"
• Pulse Oximetry Screening- The Saga Continues
• Finally. Ready to screen for the most prevalent birth defect.
• Dear Secretary Sebelius...
• The Birth Announcement (That We Didn't Want to Send)

• Finding Christmas. 25. Dec, 2011
• The Birth Announcement (That We Didn’t Want to Send) 12. Dec, 2011
• A Fight for Newborn Hearts 01. Dec, 2011
• On a roll… 03. Oct, 2011
• Universal Newborn Screening for Heart Defects Recommended 25. Sep, 2011