Tag Archives: Advocacy
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

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 oxygen in the blood. Low oxygen levels signal the need for further testing to look for a heart-related problem.

View the report here: Newborn Screening for Heart Defects Using Pulse Oximetry Recommended

There are few words to describe the excitement.  Thinking back to Eve’s Impact, her diagnosis and surgeries – and on to that day in the fall of 2009, when the team in Minnesota agreed to pursue a pilot project, to discussing a federal nomination with the committee member, to providing comments to the federal advisory committee and participating in this federal workgroup that yielded this report..it’s been a whirlwind.  Now, all this news coverage in the past 24 hours.  It’s clear the time has come to use all the tools available to support the early detection of heart defects in newborns.

http://www.cbsnews.com/video/watch/?id=7377689n&tag=mg;earlyshow

http://articles.latimes.com/2011/aug/21/health/la-he-heart-screening-20110822

http://www.webmd.com/parenting/baby/news/20110819/blood-oxygen-test-finds-heart-defects-in-newborns

http://www.medscape.com/viewarticle/748382

http://www.baltimoresun.com/health/boostershots/la-he-heart-screening-20110822,0,1119997.story

http://seattletimes.nwsource.com/html/health/2015978538_webheart22.html

http://www.smartplanet.com/blog/rethinking-healthcare/could-a-new-screening-help-identify-heart-problems-for-newborns/6335

http://health.usnews.com/health-news/family-health/heart/articles/2011/08/22/steps-outlined-to-screen-all-newborns-for-heart-defects

http://blogs.wsj.com/health/2011/08/22/screening-newborns-for-congenital-heart-disease/?mod=WSJBlog

Dear Secretary Sebelius…

Dear Secretary Sebelius…

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 of newborn screening for critical congenital heart disease.  While many do not have the capacity to lobby directly on issues such as this, I hope that is not misinterpreted as a lack of intense interest or advocacy.

If you aren’t yet aware, something in the neighborhood of 40 states now have grassroots online community pages focused on implementing routine pulse oximetry screening for newborns.  The recent movement of New Jersey, Maryland and other states toward this standard of care has started a significant state-by-state groundswell of support.  Many providers, payers and policy leaders have been hopeful that the federal guidance surrounding this important screening would happen in a timely fashion – giving states a leg up in their own implementation efforts.

As I write this, Minnesota (with a strong, aggressive pilot program) is starting to screen 15,000 babies this year.  New Jersey is poised to act on its legislative mandate – but without any clear guidance or standard protocol to assist.  We’ve shared our Minnesota protocol and educational materials, and will continue to do so with any healthcare institution, system or public health department that asks.  But the point is, there are hospitals and states eager to adopt this standard, prove its efficacy, and strip away the few remaining uncertainties that can only be answered through real-world implementation.

Right now, babies are getting discharged from hospitals every day with a hidden disease that could take their lives.  At best, the missed diagnosis of newborns with CCHD results in surgical compromise, neurological impairment, developmental delay, organ failure, and long-term feeding issues…all at huge costs to the healthcare system.

We all know pulse oximetry is considered the 5th vital sign. It’s routinely done on any adult with the slightest ailment or injury.  But somehow babies, who just ventured into this world and are breathing oxygen for the first time ever, should not have a pulse ox check before discharge?  Even if you take screening for CCHD out of the equation, this is a standard of care that is long overdue in the newborn nursery.

Physicians, hospitals and advocates clearly understand the importance of early detection of newborn diseases and disorders in saving lives and reducing healthcare cost burdens associated with late diagnosis.  It’s also a huge issue for our rural and underserved populations – who will continue to fall through the cracks if this simple point of care evaluation does not become a standard of care.  I have included a spreadsheet with just a small, but recent, survey of families impacted by CCHD (1in100_Informal Survey Responses_0111).  I am just one mother – and that fact that I personally know every family responding speaks volumes as to the need for this simple point of care screening.  In addition, I got this note just yesterday:

My baby went 4 and half weeks undiagnosed despite our complaints of poor eating, and breathing strangely! He saw 4 different pediatricians, after the two he saw in the hospital and no one    bothered with a pulse ox because I was a first time, very tired mother. He nearly died in our arms 3 days after his one-month check up! Inexcusable!!! What is the extra expense of babies like Gunner who then was so critical required a life flight and weeks of life support? Had the defect been caught initially, our entire family could have endured less trauma. Thank God we still have him and he is healthy, that is ONLY because of God’s grace. I know there are too many others who are not so lucky. ~Dana

I am confident that the work of the ICC (Interagency Coordinating Committee) will provide you an “action plan” that addresses your concerns and fills in the stated infrastructure gaps. In the 90 days allotted for this task, 1,000 additional babies will have died from Congenital Heart Disease.  The situation is grave.  The #1 cause of death in infancy in the U.S. is congenital anomalies, and the #1 cause of death from anomalies is congenital heart disease. Secretary, on behalf of my daughter Eve and 40,000 babies born each year with heart defects, I urge you to leverage your leadership and expertise in public health to advance this recommendation to the benefit of newborns throughout the United States.

With appreciation,

 

Annamarie Saarinen, 1in100

cc: Senator Amy Klobuchar
Congresswoman Betty McCollum

 

annamarie@1in100.org
Know More. Do More. Facebook.com/1in100
newborncoalition.org

http://cchdscreeningmap.com/

24 hours. Make an impact.

24 hours. Make an impact.

Surreal Day Part 1: Today marks Eve’s 2-year rebirthday.  April 13, 2009, Dr. del Nido and his team stopped our 4 month old baby’s heart for 6 hours, repaired it, and started it again.

Surreal Day Part 2: Following some weird arrhythmia this week, I canceled my DC trip and headed in for morning echocardiograms, EKGs and evaluations for a very crabby 2-year-old (needless to say, these exams don’t exactly get easier past infancy) at U of M Amplatz Children’s, (where Eve spent 4 months of her life in as a newborn). Results were awesome – echo and EKG looked great…just keeping an eye on the heart rate moving forward.

Surreal Day Part 3: Then it was off to Fairview Southdale Hospital in afternoon for a late day in-service training session on pulse oximetry screening for heart defects.  This was attended by administration and newborn nursery directors from 5 large hospitals.  The Minnesota rollout continues.  Dr. Kochilas and Dr. Thompson presented screening protocols and educational materials. We also talked about health IT and how much easier this will get to report results over time.

This is also the hospital where I gave birth to Eve (and our other children) and where she was first diagnosed with heart failure.  Surreal.

Surreal Day – Part 4: It is coming down the wire.  On October 15, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children sent a letter to Secretary Sebelius recommending all newborns be screened for Critical Congenital Heart Disease using pulse oximetry.  She has 180 days to respond – which means until the end of this week.

Over the next 24 hours, it seems like a great idea to rally.  That means contacting the Secretary, and asking congressional members to reach out to the Secretary on the impending federal recommendation to screen all newborns for CCHD.  The next 24 hours are critical.  This is the path to saving lives.

Here’s what individuals, families and organizations can do, if possible.

1) Reach out to Secretary Sebelius at Health and Human Services to let her know of your support for screening for CCHD.

During business hours, call 202-690-7000.  After hours, there is VM comment line: 202-205-5445

Email your personalized letter/note to the Secretary at: Kathleen.Sebelius@hhs.gov

You can copy and paste your letter right into the email.  Use the subject line:  “Support Newborn Screening for CCHD”

2) Reach out to your members of Congress to share your support and ask them to weigh in directly with Secretary Sebelius.

Use this link – it’s quick and easy way to find your delegation, with emails and phone numbers:

http://www.contactingthecongress.org/

3) Email the appropriate version of these letters – one for Secretary Sebelius: Family letter_HHS_NBS CCHD

and one for a Congressional member:  Family letter_Congress_NBS CCHD

Or just use them for talking points if you are calling (or do both!)  You can customize however you’d like.  The more personal the better.

Here’s the background briefing we’ve been using with leadership as well.

4) Share with your contacts.  The online CHD community is powerful and beautiful thing.  When it mobilizes, it rocks.  If you need more, Cora’s mom has compiled one of the best online resources for pulse ox info at Cora’s Hopes and Dreams:

5) Let me know what you are hearing from your outreach at Facebook.com/1in100.  I suspect this is not on the radar of most elected officials – use it as an opportunity to make them aware of CHD and what can be done to save lives and improve outcomes through early diagnosis.

P.S. Since this is mission critical, I don’t have the time (or talent) to include the links to every online site and Facebook page that can help with this…but there are many.  Grateful for every single one.

 

Where it all started.

Where it all started.

After Eve’s diagnosis and rapid decline into heart failure at 2 days old, a strange series of coincidences led me to a place that has been a lifeline for our family.  BabyCenter.com hosts hundreds of community message boards.  Another mother got word to me that there was a relatively new board that had been started for families of babies and children with heart problems.

http://community.babycenter.com/groups/a5055/babies_and_children_with_heart_problems

The counsel, wisdom, intelligence, clinical data and resources we found here were amazing.  More importantly, the comraderie and friendships have saved us.  This is where the journey toward awareness and advocacy started for me.  I just wanted to share my gratitude – and humility as we’ve often taken more than we’ve given to this wonderful community of heart families.  I continue to be engaged and strive to do more whenever possible.