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

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/

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/

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

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…

This gorgeous little girl is Taryn Kennedy.  She was happy, healthy, growing until almost one month old.  Her parents didn’t see it coming, and she was lost to an undiagnosed heart defect – TAPVR – at 29 days old.  I stood next to her mom, Vi Kennedy (blessherheart.org), just two weeks ago at the national advisory committee meeting evaluating newborn screening for Critical Congenital Heart Defects.  She is eloquent and brave…and she is not alone.

I sent this via email to the members of our Minnesota pulse ox pilot team about 6 weeks ago.  Thought it was worth posting here.  I am amazed by the continuity and consistency of the data that comes in regarding newborn screening for CCHD.  I get that we have a bias…but the facts are simply becoming far to difficult to argue with.  As Dr. Martin put it to the national committee “these are not isolated incidents, babies are missed all the time…”   Feel free to add your comments or feedback – the armor gets stronger every day.  Here’s the email:

Wanted to share this with you.  They are the top 8 defects – in order of prevalence – that are the most often missed during routine newborn exam alone (these come from Dr. Hoffman’s recent paper and gathered study data).  Below that are some of the responses heart families posted on what their undiagnosed defects were…on our Facebook page alone, we got over 2 dozen responses in a matter of a few hours.  I may post again to see what additional feedback comes in.  Would be interested to hear if anything hear strikes you as unusual (other than an HLHS baby going undiagnosed for 2 months!)   Annamarie

1. Coarctation of the Aorta (COA)

2. Interrupted aortic arch

3. Aortic stenosis

4. Hypoplastic Left Heart Syndrome (HLHS)

5. d-TGA

6. Truncus arteriosus

7. Tetralogy of Fallot (TOF)

8. TAPVC

RESPONSES:

1. Marlee had an Interupted Aortic Arch and a VSD and wasn’t diagnosed until she was 2 days old and her PDA was closing!

2. My son had d-TGA with a VSD. Dx at 5 days old!!!

3. The defects listed are critical when the children’s lives depend on the ductus staying open. This is why I would like to follow the pulse ox push before discharge with a pulse ox at the pediatrician’s office on day three. There will be many, many more caught if we can do both (posted by a former NICU nurse in Tennessee)

4. They didn’t catch Lauren’s HLHS in utero. We didn’t know something was wrong until about 19 hours after she was born when she stopped nursing. The surgeon told us later they may have missed it because her left ventricle is 60% the size it should be, which is large for HLHS. At one point, they even considered trying to let her use the left ventricle, but they decided against it.

5. They didn’t catch Brayden’s TOF in utero. Diagnosed at 3 days old.

6. None of Caylen’s defects including heterotaxy, dextrocardia, TGA, av discordance (just some of the major defects) were seen in utero. It took them three days just to figure out all her defects and diagnose her.  I love the pulse ox campaign, though, to catch all the ones who don’t show up as dramatically as hers did after she was born. I push it to everyone. My brother is a respiratory therapist in a NICU and he’s pushing the idea, too.

7. My daughter’s TOF was diagnosed at three days old…we knew something wasn’t right because her murmur was SO loud but, nothing was ever picked up in utero.

8. My son was born with a vsd, pds, asd, and an extra mass in his heart.. and he was born with heterotaxy and polysplenia syndrome and we didn’t find out until he was 2 months old because he was breathing fast. I took him to the emergency room and that’s how we found out…we were in total shock.

9. My daughter’s TOF was caught by a nurse who heard the very loud murmur AFTER the doc wrote our discharge orders for home. We were literally 10 minutes away from going home. An OB/GYN did our US at 18 weeks and couldn’t get the blood flow. I will always wonder if someone else would have detected the TOF. I’m all for the pulse ox and blood pressure check on upper and lower extremities.

10. I had 5 sonograms – and none caught Dom’s CHD (coarctation of the aorta, biccupsid aortic valve, mitral valve stenosis). The only reason why it was caught before we went home because we were in NICU because they thought he had an infection and he was getting antibiotics. They heard the mumur when he was 4 days old and did the echo just as procedure. I was told that if it wasn’t caught then, I would have been back in the hospital before 2 weeks was up with Dom in heart failure. So I am thankful that we happened to be in the right place at the right time.

11. Maddy’s TAPVR went undetected for two weeks after birth.

12. My son had critical aortic stenosis that was not caught until a few hours after he was born. He turned blue shortly after he was born. He ended up having a heart transplant when he was 6 weeks old. He will be 7 yrs next week! I love the idea of the Pulse Ox for all new borns!

13. Alex’s HLHS wasn’t diagnosed until he was 2 months old. It’s a miracle he’s still with us. An unusually large left ventrical was the difference.  Hopefully we can work together to make sure more heart defects are detected earlier so others won’t have to worry like we did.

I am happy to share the good news from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) meeting last week in DC.  This committee makes national recommendations on which disorders should be universally screened for in newborns. (http://www.hrsa.gov/heritabledisorderscommittee/).

The committee voted to accept the nomination of critical congenital heart disease, using pulse oximetry, to be considered for recommendation to the Secretary.  A favorable subcommittee report on pulse oximetry was presented by Dr. Piero Rinaldo from the Mayo Clinic, who is a voting member of the committee (as well as a MN Advisory Committee member and counsel on our MN pilot). As a next step, the ACHDNC has an Evidence Review subcommittee that reviews those nominations.

This was one of two nominations to be approved (the other being screening for severe jaundice). The consensus of the committee was that pulse oximetry was the higher priority of the two – and the committee voted to make screening for CCHD their #1 priority moving forward. Both nominations have been forwarded to an evidence review group, which is directed by Dr. James Perrin at Harvard.  I spoke to Dr. Sanghavi (Chief of pediatric cardiology at U Mass) about this today…he has long been a vocal advocate for pulse ox screening (http://well.blogs.nytimes.com/2009/04/09/saving-babies-with-broken-hearts/) and would be happy to share his insights with Dr. Perrin.  I am still learning how the Evidence Review committee is formulated, but it seems there is some strong support readily accessible.

The workgroup will obviously be looking at the AHA evidence review on pulse oximetry – and seeking additional information. There seemed to be a clear consensus that there is sufficient evidence that CCHD is a serious condition, that early identification leads to better outcomes, and that pulse oximetry is a suitable screening test. The most important remaining issues that need to be addressed would appear to be logistical: in particular, how can universal pulse oximetry be applied in a wide range of birthing centers, many of which lack pediatric cardiology expertise to interpret neonatal echos.

I was very specific in addressing this in my comments – stating that while every facet may not be in place from the outset, telemedicine can and will be a viable the solution to this challenge.  The president of the March of Dimes is particularly interested to see what comes out of evidence review in this regard – stating concerns that babies that test low may or may not get an echo promptly – and even if they do, it won’t be read by a qualified pediatric cardiologist in the same timely manner as in major medical centers.  This is a valid concern…and one we have brought up in our discussions.  I mention it in terms of helping proactively address it in our study (to the degree possible).

Some other folks in attendance stated that they think one of the the major hurdles in terms of a favorable recommendation of universal pulse oximetry is the lack of large-scale pilot studies needed to demonstrate feasibility and practicality on a community-wide basis.

The committee is aware of our pilot – and is very enthusiastic about receiving the latest information.

Moving forward, the recommendation would goes to the DHHS Secretary, who is required by law to respond within 120 days.  The chair, Dr. Howell stated that she has been moving much faster on previous interactions….and has generally accepted the recommendations sent her way.

The committee can and will look and domestic and international data – and there is a solid collection to put forth and the Minnesota study will help address not only some screening consistency issues, but the outstate diagnostic and treatment challenges as well.

Finally, I was very encouraged by Chairman Howell’s commitment to “not let this one sit on the shelf”.  Dr. Rinaldo did an excellent job of bringing this nomination forward and presenting the information in a way that was unanimously embraced by the committee.  It was actually quite overwhelming when the two votes actually happened.

This is historic work…thank you to all that continue to work to make this happen.  Now the pressure is really on. 

Presentation to the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

January 21, 2010

Dr. Howell, Ladies and Gentlemen of the Committee,

Thank you for the opportunity to be here today. My name is Annamarie Saarinen. My daughter Eve was diagnosed at 2 days old with a severe mitral valve defect and enlarged heart. She was very nearly sent home – and was in complete heart failure at 5 days old.  24 hours later, she was also diagnosed with SVT and Wolf Parkinson White Syndrome.  In other words, she would never have made her one-week well-baby visit.

During those first weeks, I learned how fragile life is.  I learned that 1in100 babies are born with a heart defect – the world’s most common birth defect – and that nothing I did caused us to become that 1in100.

I also learned to rely on a small monitor that stayed wrapped around Eve’s foot.  It was a pulse oximeter – measuring the oxygenation in her blood.  The phrase “what are her sats today” became part of our vernacular.  Above 95%, we’re good.  Below, her heart wasn’t working the way it needed to.

While most textbooks identify nearly 40 different heart defects, Dr. Jack Rychik, at CHOP says there are probably more than 100 different defects.  Many congenital heart problems are very difficult to identify by fetal or neonatal ultrasound. These issues are even more relevant in hospitals outside major medical centers or in rural areas.

A recent study showed that less than 1/3 of CHDs are diagnosed prenatally.  That leaves 2/3 that are NOT.  Of these, data indicates that routine newborn exams fail to detect at least half (50%) of CHD cases.*

Murmurs often indicate a heart defect, but many serious defects do not present with a murmur immediately after birth. Even with a murmur and a careful exam, additional measures can help increase early detection of life-threatening cardiac disease.

Pulse oximetry – done at the appropriate interval between 24-48 hours after birth – can indeed detect otherwise “silent” heart defects. More than 60% of defects can result in mild desaturation (like Eve’s) not detectable with the eye, but readily detected by pulse oximetry. Simply put, pulse oximetry DOES increase detection of true CHD over exam alone. And the earlier CHD is detected and treated, the more likely a child will survive and have fewer developmental delays and long term health complications.** A baby coming back to the hospital in heart distress is PROVEN to have increased chance of death and a worse neurological outcome that those diagnosed before discharge.

False positive rates have already proven to be quite low – about 1/3 of one percent (.034).  New generation pulse oximeters may result in even greater specificity and fewer false-positives…in addition to catching any number of other respiratory and lung issues that can also go undiagnosed.

I believe the nomination process will clearly show that postnatal screening to identify CHD should be a vital part of normal newborn care.  There are many fine institutions in this country that already realize this and are screening without mandate, including Regions Hospital in Saint Paul, Mary Bridge Pediatric Heart Center in Tacoma, and Children’s National Medical Center right here in Washington DC.

Pulse oximetry testing is non-invasive, easily performed, inexpensive, and requires little training of nursery personnel – even we have one at home. It can simply be done in conjunction with other in-the-nursery screening, such as hearing…and will require very few unnecessary echocardiograms.

I understand the role of this committee in ensuring that suitable newborn screening tests are developed and safe, effective treatments are available for implementation.

Congenital heart disease accounts for the majority of deaths from congenital defects in childhood – six times more common than chromosomal abnormalities.

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined

By any standard, this is a public health need.

I am very respectful of the need for fiscal responsibility in health care  – but have little patience for more babies struggling or dying needlessly.  In the past 3 months alone, I personally know several families who have buried their babies due to undiagnosed heart defects.

Eve’s heart had about a week left when we flew her to Boston for open heart surgery 9 months ago.  Today, she is proof that medical professionals can work their magic on babies with severe heart issues – BUT ONLY when they are given the timely opportunity to do so.  I look forward to the opportunity to keep you informed as our own Minnesota study moves forward supporting the other clinical data pointing to the efficacy of pulse ox screening.  On behalf of the 40,000 US families whose babies will be diagnosed with heart disease this year – and the 4,000 who will not see their first birthdays, I sincerely thank you for your commitment to the health of newborns and children.

~Annamarie Saarinen, 1in100

———————————————–

*Although many of the missed cases will be only a ventriculoseptal 2 defect (VSD), an additional study showed that only 38% of patients with IAA, HLHS, COA, and aortic stenosis (AS) became symptomatic or were clinically diagnosed prior to discharge.7 Some types of CHD have complete mixing of venous and arterial blood, with resulting pulse oximeter readings (SpO2) in the low 90s, and many observers cannot recognize arterial desaturation until the SpO2 drops into the mid- to low-80s. Therefore, mild desaturation may indicate serious CHD and not be recognized.

** March of Dimes