Tag Archives: newborn screening
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

The good with the bad.

The good with the bad.

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, is to be taken as gospel.

It’s always exciting to see another published article on newborn screening for Critical Congenital Heart Defects.  The more info out there among clinicians, the faster the adoption rate.  That’s because 99 percent of the published pieces on this topic (at least since 2010) have been in support of routine screening of newborns for heart defects.

Two more editorial and commentary pieces hit the circuit this week in The Lancet: Kemper Screening of newborn babies Lancet 2012

and

A new milestone in the history of CHD Lancet 2012

There are some very important points addressed in each, most of which I fully agree and support.  Some of the comments – not so much.  To suggest the importance of better prenatal detection is of critical CHD is one thing.  To add that the purpose of such is solely to give families the choice of termination is entirely another.  The example used is Hypoplastic Left Heart Syndrome, which most would argue is now being treated with a high rate of success.  (See Gil Wernovsky, MD commentary: The Paradigm Shift Toward Surgical Intervention for Neonates With Hypoplastic Left Heart Syndrome.  To be sure, there are thousands of children in this country, and around the world, now surviving and thriving with HLHS.  To disregard this important clinical progress is a discredit to those patients, to those individuals and institutions providing interventional care, and to future families faced with this diagnosis.

With many scientific paper and editorials, we have to take the good with the bad, hoping that in most cases, the good far outweighs the bad.  Onward and upward.

 

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/

HHS Adopts Recommendation to Screen Newborns for Heart Defects

HHS Adopts Recommendation to Screen Newborns for Heart Defects

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 heart defects for many years before Eve Isley was born…but her life, and her spirit helped inspire many to move this down the pipeline toward a federal recommendation to screen every newborn in this country for heart defects using pulse oximetry.  It’s a good day for babies and families.

Many thanks and  gratitude to the countless individuals and organizations who supported this – in the early days, and just recently.

Many thanks to Secretary Sebelius and her staff for taking the initiative to dig deeper and get the answers required to ultimately back a population health issue that will save and improve lives.

Many thanks to the federal advisory committee (SACHDNC) – and it’s diligent, poised and passionate leadership – that voted to recommend this screening one year ago (Dr. Howell, may your commitment to newborns and children will be emulated by many).

Many thanks to the CDC, HRSA, NIH, AAP, AHA, ACC, March of Dimes, and countless physicians, advocates and public health professionals who stepped up last winter to work on a strategic framework for implementing this screening.

And many thanks to this community.  Through 1in100, we have known the grace and strength of families willing to drop everything and help each other through the unthinkable.  Continued hope and healing to all those touched by this wicked disease.

This was a battle worth winning.  The war continues.  We are ready.  #1in100

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

Progress.

Progress.

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 this recent story from CNN online.  http://thechart.blogs.cnn.com/2011/07/22/darth-vaders-mom-we-focus-on-today/

Dr. Gupta highlights little Max, the Tetralogy of Fallot survivor who played Darth Vadar on the high profile SuperBowl ad.  His family’s advocacy stretches beyond CHD to patient access to pediatric specialty care.  It’s important to understand that not so many years ago, Max would never have survived TOF.  And the fact is that today, Max still may not have survived TOF without early diagnosis.  Made me curious about the informal survey findings shared at the January CCHD Implementation Workgroup meeting in DC.  I looked back and found that of the 68 patient families responding (all postnatal diagnosis), 12 were cases of TOF, a defect that would surely present with desaturation, if evaluated with pulse oximetry. Of those 3 babies were not diagnosed until after discharge from the nursery.

This country is waiting – today – for the U.S. Department of Health and Human Services to adopt a formal recommendation already made by its federal advisory committee to screen all newborns for Critical Congenital Heart Defects before discharge from the hospital. Max was diagnosed before birth (but just barely). Tetralogy of Fallot (TOF), Max’s condition – is one of the most prominent heart defects that can be detected with the help of pulse oximetry screening in the newborn nursery. Babies around the country being born in hospitals where these conditions are not seen very often will be helped, or saved, by early diagnosis. It’s really just a simple vital sign check – non-invasive and about the cost of a diaper change.

We continue to be hopeful that the federal guidance on this issue will come very shortly – so critical for the advocates, and the provider and public health communities who are continuing to move forward.

The statement from the federal advisory committee can be viewed here: http://www.hrsa.gov/heritabledisorderscommittee/correspondence/October15th2010letter.htm

More about the SACHDNC:
http://www.hrsa.gov/heritabledisorderscommittee/

More about the SACHDNC: Workgroup on Screening for Critical Congenital Cyanotic Heart Disease
http://altarum.cvent.com/events/ccchd-meeting/custom-22-f8929dc795694e7aa6c588c263e31554.aspx

SACHDNC letter to Secretary Sebelius Recommending Newborn Screening for CCHD

http://www.hrsa.gov/heritabledisorderscommittee/correspondence/October15th2010letter.htm

Statement from AAP New Jersey on Pulse Oximetry screening:

http://pulseoxadvocacy.com/wp-content/uploads/2011/07/Bill-A3744-1.pdf

http://www.cchdscreeningmap.com/

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/

Early Detection of CCHD – Pulse Oximetry Advocacy

Early Detection of CCHD – Pulse Oximetry Advocacy

Pulse Oximetry Advocacy Temporary Toolkit:

Interactive screening map with current state legislation, legislation pending and hospitals screening for CCHD:

http://www.cchdscreeningmap.com/

I. INITIAL OUTREACH TARGETS

State Departments of Health

Newborn Screening and/or birth defect surveillance divisions

Hospital Medical Staff – contacts

Pediatric Cardiology
Neonatology
Pediatrics
Nursing
Newborn nurseries/Labor & Delivery

Hospital Administration

CEO
Chief Financial Officer
Medical Director
Nursing Executive Leadership
Patient Safety/Patient Care

Organizations

AAP – State Chapter leadership  – AAP Chapters

Hospital Associations by State

America Heart Association (state chapter)

Pediatric Heart Organizations /Sites (some with State Chapters)

Mended Little Hearts
It’s My Heart
Lasting Imprint
Congenital Heart Information Network
Bless Her Heart
Children’s Heart Foundation
James’ Project
CHD Speaks
BabyCenter Community: Babies and Children with Heart Problems
Helping Hands, Healing Hearts
CHD Babies
II. INITIAL TALKING POINTS

Website and address of every hospital in the US, by state: http://hospitalandmedicalcentercompare.com/by-state

Draft Hospital Outreach Letter

Click here for the Word document file.Letters sent in support of Newborn Screening for CCHD to the Department of Health and Human Services

Children’s National Medical Center, Washington DC

Darshak Sanghavi, M.D., UMass Memorial and University of Massachusetts Medical School Letter

Patient Safety Advocates Letter

 

III. FEDERAL RECOMMENDATION – NEWBORN SCREENING FOR CRITICAL CONGENITAL HEART DISEASE (using Pulse Oximetry)

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.  The Secretary responded on April 21, 2011, by asking the newly convened Interagency Coordinating Committee (ICC) to review the recommendation and specifically address implementation and infrastructure gaps associated with state by state adoption of this screening.  The ICC has been tasked with providing a full action report within 90 days (which would be before the third week of July, 2011 or sooner).
Secretary Sebelius
The interim period is still an excellent time to weigh in with Secretary Sebelius in support of early detection of heart defects.  Advocates may use their own experience, share a screening update from their state or advocate broadly for national screening.
To reach the Secretary of Health and Human Services, call 202-690-7000.  After hours, there is VM comment line: 202-205-5445 

Or 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”

Congress
Advocates may also weigh in with the Congressional Members in support of saving lives through screening for CCHD.

Use this link to find your delegation, with emails and phone numbers:

http://www.contactingthecongress.org/

Sample Letters

Use the following sample letters for talking points – or customize however you’d like.  The more personal the better.

Sample letters – one for Secretary Sebelius: Family letter_HHS_NBS CCHD

and one for a Congressional member:  Family letter_Congress_NBS CCHD

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

Outreach to State Elected Officials/Government

Directory of Federal, State, Local Officials and Government Agencies

SHARE

The online CHD community is powerful.  Utilize the following resources to mobilize, gather and share information:

Cora’s Hopes and Dreams

Children\’s National Medical Center Pulse Ox Program

Facebook Pages:

Pulse Oximetry

Pulse Ox Please

Check Their Hearts: Support Pulse Oximetry Screening for Heart Defects

Pulse Ox Pennsylvania

Pulse Ox Mississippi

CHD Babies

1in100

 

 

Up Next: Newborn Screening for Heart Defects

Up Next: Newborn Screening for Heart Defects

The Department of Health and Human Services just held a stakeholder call to update on the status of the recommendation to screening newborns for CCHD with pulse oximetry. Given the 5 recommendations related to this screening, the Secretary has found several items she would like to have further clarification on to move forward with the screening (see the original recommendation letter here). 

It was clearly stated that the Secretary recognizes the critical importance of CCHD, and has requested further efforts be undertaken immediately to work through the issues surrounding the pulse ox technology itself, follow up diagnostics, service infrastructure, and education. The Newborn Screening Saves Lives Act (of 2007) required the formation of a supplemental Interagency Coordinating Committee on Newborn and Child Screening issues. This committee includes directors of the CDD, HRSA, NIH and AHRQ. The committee has been IMMEDIATELY tasked with reviewing the original SACHDNC five recommendations, any gap areas, and the document produced from the Implementation Workgroup – their goal is to close the gaps. It is the committee’s first order of business…and they have 90 DAYS to provide a plan of action.

Here’s what I know. Without the outreach all of you did, sharing your support and personal stories, this important secondary advisory committee step wouldn’t be happening. This was going down the road of being an averted recommendation. Now it’s not.

So while we might not have the green light quite yet, the motor is running and the car is in gear. Please accept my profound gratitude for all you continue to do to support early diagnosis of heart defects.

I can be honest here, with all of you. These last 10 days have been hard. a hundred hours of time, anxiety, nausea, all of it. My first reaction to the 90 day delay was this: in 90 days, 1,000 more babies will die – and realistically, 200-300 of them will be contributed to by late diagnosis.

But I also realize there is solid intent on the part of the federal stakeholders to get this right. In that spirit,  let’s support this effort, continue the work already being done, and look forward to widespread implementation of newborn screening for CCHD.   #1in100

The unforgettable ride.

The unforgettable ride.

Two years ago this week, our 9 week old daughter Eve was lying peacefully on our bed.  It was one of those rare, but happy weeks when she was home from the hospital.  Her mitral valve leak was “moderate” when we were discharged….down from “severe” during those first few weeks.  We were just so desperate to bring our new baby home….relatively speaking, we were very, very new on our CHD journey.  I was going to start changing her, when my husband and I thought she was breathing a little heavy.  As had become our routine, we grabbed the stethoscope to check her heart rate.  No need to start the stop watch.  It took only a couple seconds to know she was in SVT – Supraventricular Tachycardia. During episodes of SVT, the heart’s electrical system doesn’t work right. In her case, her heart rate would soar up to 280 beats per minute.  Most episodes of SVT are caused by faulty electrical connections in the heart.  In Eve’s case, in addition to her mitral valve defects, she had Wolff-Parkinson-White syndrome – and that was causing her chronic SVT, happening 20 times a day at its worst. We had learned in the hospital what “tricks” could be used to help pull her out of these heart-racing episodes.  Pushing her knees up to her chest, ice across her eyes and nose area.  These would usually work, although in her early hospital bouts with SVT, she was almost always given the drug adenosine which ran right into her line – a straight shot to jolt the heart back into rhythm.  We had seen SVT often enough that we were quite calm about it.  Even when we couldn’t get her heart rate to come back down, we calmly got our coats and shoes on, grabbed a bag and headed for the hospital.

It was about 10 minutes into that 20 minute drive.  Even though it was dark in the van, I could tell her skin had changed color.  She stopped moving.  I put my hands on her couldn’t feel her breathing in her carseat.  I started to panic….telling my husband to drive faster.  I unbuckled her and held her in my arms – in a car going 80 mph down the frozen highway.  If she was going to die, I was going to be HOLDING her, not WATCHING her strapped in a carseat.  I prayed.  Hard.  Just let her be OK.  PLEASE…I will do anything. Quietly, I started whispering that mommy was there and everything was going to be OK.  I said “I’m sorry”….over and over.

Once we got to the ER, the docs started working on her.  They tried the ice.  No.  Then they tried putting her whole head and upper body into a big tub filled with water and ice.  No.  Then again.  Still 260 bpm.  Then they started trying to get a line in her to do the adenosine.   She was always, always horrible to get a line in.  Tiny veins…most of which had been annihilated by all the IVs and PIC lines during her ICU stays.  They handed her to me with a towel, she was freezing cold and limp…and I started whispering again.  This time: “Mommy’s still here.  It’s not time to leave.  Slow your heart down and come back home with us.”  I started reciting “Brown Bear, Brown Bear” in her ear…her favorite.  I can picture all of this like it happened yesterday.  After about 30 seconds, like magic, we watched the heart rate monitor pop back down to 130.

We actually ended up going home that morning.  She started to get her color and vitality back – and docs didn’t think we needed to stay since we were scheduled for our cardiology appointment 2 days later.  It was at that appointment we found out that Eve’s heart had plummeted back to a 4+ leak and was summarily admitted to the ICU for an extended hospital stay.  She was in heart failure.  During the following 7 weeks, she would be home with us a total of 9 days, including the few days leading up to her trip to Children’s Boston for her ablation and open heart surgery.

Since we had to stay strong for Eve and our other children, I’m not sure Paul and I ever truly absorbed what happened that night – or really much else leading up to and through her surgeries.  It’s survival mode.  Heart families everywhere get that.

But this past weekend, when I looked at the calendar and realized it was the 2nd anniversary of Eve’s christening – and approaching two years since that horrific car ride to the hospital – I had another meltdown.  I prayed that we would never experience that fear again. I prayed others who know this fear may have peace in their journeys.  And I prayed that we never forget the debt we owe.

Eve’s life – and the talents of her medical teams have given us the unique opportunity to know more and do more.  It is because of her that 1in100.org and Facebook.com/1in100 were founded. She has even helped ensure that soon every newborn in this country will be screened for heart defects before leaving the hospital.  We are profoundly grateful…