Tag Archives: early detection


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:

More about the SACHDNC: Workgroup on Screening for Critical Congenital Cyanotic Heart Disease

SACHDNC letter to Secretary Sebelius Recommending Newborn Screening for CCHD


Statement from AAP New Jersey on Pulse Oximetry screening:



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:



State Departments of Health

Newborn Screening and/or birth defect surveillance divisions

Hospital Medical Staff – contacts

Pediatric Cardiology
Newborn nurseries/Labor & Delivery

Hospital Administration

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


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

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



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”

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:


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


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




Welcome to the World Wednesday

Welcome to the World Wednesday

This is the most popular day for babies to be born…Wednesdays, I mean.  15.4% more births happen on Wednesday than on the average day.  Got me thinking – my first two children, Jack and Elle, were born on Thursdays.  Baby Eve, a Friday.  Not the first time I’ve fallen out of the statistical norm.  We are 1in100 for Pete’s sake.

So I did the math – and it means that today, 126 babies were born in the US with a heart defect.  A study from a few years back cites that routine newborn examinations STILL fail to detect more than half of babies with heart disease; examination at 6 weeks misses one third.

I personally know 17 children sleeping in intensive care units tonight.  I also know 11 families who have buried their babies in the past 5 months, including baby Cora’s parents.   She went home from the hospital with her mommy – just like half of the 126 other CHD babies born this day.  One month ago today, Cora died nursing in her mothers arms.

While this all seems very, very wrong I choose (partly for sanity, partly for peace) to view it as our window in humanity to make some things right.  Simple, safe newborn screening for the world’s most common birth defect is just a start.  Check it out.  Pass it along.

And welcome to the world, sweet Wednesday babies.

What is Newborn Screening with Pulse Oximetry?

Pulse oximetry monitoring uses a light source and sensor to measure oxygen in the blood.
A soft, wrapped sensor is wrapped around the baby’s foot.
Light passing through the foot measures the amount of oxygen in the blood.
The test is quick (3-5 minutes) and painless. Pulse oximetry monitoring should detect most heart defects.

Why is it important to check babies for heart defects?

If undetected, some congenital heart defects can cause serious or even life-threatening problems. Early detection and early treatment lead to better outcomes.

Why check the blood oxygen level with pulse oximetry?

A low oxygen saturation level may indicate the presence of a heart defect.

What are the benefits of the screening?

Babies are less likely to be sent home with unidentified heart problems – some of which can cause acute, emergency situations or even death.  If identified in the first 24-48 hours of life, medical teams are available for diagnosis and treatment of CHDs. Critical congenital heart defects, requiring immediate treatment or repair, can be performed before discharge from the hospital.

Will screening find all types of heart defects?

No current screening tool exists to detect CHDs 100 percent of the time. Pulse oximetry screening should detect most heart defects (those associated with a low blood oxygen level). However, some heart detects may not be found on screening (those not associated with a low blood oxygen level).

What will happen if a baby has a low blood oxygen level?

The pulse oximetry test will be done again. If the level is still lower than expected, then an echocardiogram (sonogram of the heart) will be done. A pediatric cardiologist will ‘read’ the echocardiogram to check for the presence of a heart defect. If a CHD is found, the pediatric cardiologist will start collaborating on those findings and working on treatment options. Most heart defects can be corrected or improved with surgery, procedures and/or medications.

What are the other signs and symptoms of heart defects parents can watch for?

• Baby tires easily during feeding (falls asleep before feeding finishes)
• Sweating around the head, especially during feeding
• Fast breathing when at rest or sleeping
• Pale or bluish skin color
• Poor weight gain
• Sleeps a lot, not playful or curious for any length of time
• Puffy face, hands and/or feet
• Often irritable, difficult to console

Congenital Heart Defects (CHDs) are defects that are present at birth and affect the structure or function of the heart or vessels.

• Heart defects are the most common birth defect.
• CHDs occur in approximately one of every 100 births.
• About 40,000 babies with CHD are born in the US each year.
• Heart defects are the leading cause of newborn and infant death.
• Although some babies will be diagnosed before birth or at birth, sometimes the diagnosis is not made until days, weeks, months or even years later.