Eve’s Journey + A Heart Ball

Eve’s Journey + A Heart Ball

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 2013.  These remarks followed a video presentation of Eve\’s journey produced by the AHA. The event raised more than $900,000.

I want to thank everyone here tonight for your enthusiasm and generosity…and special thanks to AHA, and the rest of our family for being there through the journey.

4 years ago this week, our lives changed forever.  Eve was our Christmas gift – perfect on the outside, but broken inside.

There are people in this room tonight that we are forever indebted to – Dr. Lazaros Kochilas, whose compassion and craft kept Eve’s heart functioning long enough to get her to life saving surgeries – done in collaboration with Dr. Pedro del Nido at Children’s Boston.  Even more impressive – the willingness of these clinicians to look at options that would help avoid delayed diagnosis of CHD in newborns…to provide greater options for treatments and intervention.  Dr Kochilas, Dr. Jamie Lohr, and several other physician leaders at U of M Amplatz, Regions, Children’s and Mayo Clinic have donated hundreds of hours to this endeavor…and every family having a baby should be grateful for their efforts.

As everyone has mentioned tonight, we’ve come so far. We know that if Eve had been born 15 years earlier – when Jack was born, she would not likely have survived.  In that short time we have made so many advancements – a testament to advances in diagnosing and treating congenital heart defects.

But even with the amazing tools that are out there, so often due to lack of funding or resources, those tools are still not available to the doctors and nurses who need them.

We will continue to work with the American Heart Association …. to invest in CHD research and programs….to advance statutes and legislative requirements for newborn heart screening here and in states across the country.  Thankfully, our state continues to lead…just yesterday I was with the Commissioner of Health, who just a few weeks ago proudly authorized statutory language that adds Newborn Screening for CCHD to the state panel.  But we still need policy help to ensure there are resources available for hospitals to do this as a population health screening and collect important data on the results for each baby tested.

Pulse Oximetry evaluation is a key first step in helping us catch critical congenital heart disease early so it can be treated.

But there is still more to do and more funding needed to develop the science to nail down the causes of CHD, and provide treatment to these kids as they grow into adulthood, advancing the specialty of Adult Congenital Heart Cardiology.

My dad and my grandmother both had rhuematic fever as children….as a young woman about my age, my grandmother became Dr. Lillehei’s 3rd surgical patient on the heart lung machine in the 1950s – which gave her another 5 years of life.  My dad had his heart valve replacements at Mayo just 6 months after Eve’s OHS.  I only wish he and my mom were here tonight….

We’ve had the privilege of volunteering with AHA, long before our lives were so profoundly touched by heart disease. I was on the steering committee for this very event more than 13 years ago, when Jack was just Eve’s age.  That year, a teenager stood on this stage post-transplant, and talked to you about the importance of early detection and the advancements in treating CHD.  That boy, now an adult with someone else’s generous heart beating in his chest was just elected to the Minnesota legislature and will be sworn in as a state rep in January.  Congratulations Nick Zerwas.  What a story.  I expect to see you often this session in the halls of the legislature – and fully expect your signature on any legislation on CHD coming your way.

Finally, please remembers, that in just the time we’ve been together tonight, more than 50 children have been born in the U.S. with a congenital heart defect (40,000 this year). 10 percent of these babies will not see their first birthday.  We need research and advocacy to keep improve those numbers…

Your support tonight makes an impact.  Thanks to Eve, our house is one where we don’t sweat the little things, and we try to keep our eye on the ball.  We’re skipping the Barbies and castles at our house this year….so please join us in giving generously tonight.  Profound thanks to each of you…   ~ Annamarie Saarinen

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