1in100

I remember our daughter Eve’s first haircut.  It happened on Saturday night, at 2 AM.  She was 9 days old. Paul and I were in the usual half-sleep that comes with having a child in an ICU.  We were down the hall from the PICU at the University of Minnesota Children’s hospital, and had just [...]

Dear Eve, Mommy went out of town for a quick trip for work this week.  But it was a trip for you too….and for the thousands of children in our country, like you, who have to spend alot of time seeing doctors to help you be healthy.  Your doctors need to share important information about [...]

February 7, 2013 Today should have been a celebration of my husband’s birthday. Today should have been a day to rally around Congenital Heart Awareness Week. Today should have been the start of our wedding reunion weekend in California. Today should have been a day to finish up some work, get the kids to school, [...]

On the eve of Eve’s 4th birthday, honored to be sharing comments from the American Heart Association’s Heart & Stroke Gala on December 8, 2012….with profound thanks to the AHA for their commitment to early detection, research and advocacy for the youngest congenital heart patients.  Newborn CCHD screening is the organization’s top policy priority for [...]

Studies and peer-reviewed journal pieces have become standard reading over my career.  After Eve’s CHD and the founding of 1in100, even more so.  While in most cases, these are the types of publications that warrant credibility by name alone, it’s important to note that not everything published is direct science, has perfect methodology, or frankly, [...]

Amanda Rose Adams takes it to the hill. Literally. We all have a role to play in advocacy.  She can help educate us all on finding the gumption to do it.  http://www.savebabies.org/blog/2012/06/not-my-fight-now-my-fight/

Last week’s study published in the New England Journal of Medicine proclaiming patients taking azithromycin (Z-Pack) had an increased risk of cardiovascular death gave me goosebumps.  Again.  Not because I have a father with heart disease and 2 replaced valves.  Not because I have a 3-year-old daughter with Congenital Heart Disease.  But because it reminded [...]

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 [...]