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There was a time – almost 3 years ago, when it would be a VERY big deal if the news media picked up on a story about how often newborns leave the hospital with undiagnosed heart defects.  Even more rare to actually mention newborn screening for heart defects (CCHD) using pulse oximetry.  Now, rarely a [...]

I had an opportunity to be in Boston a few days ago – and to visit Children’s Hospital Boston.  A fellow Minnesota family is there right now with their 8 month old baby girl, recovering (beautifully) from a heart surgery at the hands of Eve’s surgeon, Dr. del Nido (their cardiologist at the University of [...]

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 [...]

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 [...]