Screening

Early Identification of heart defects and heart disease in children is crucial to successful outcomes.  In addition to basic information about this important tool in recognizing heart problems – pulse oximetry – you can also find links or attachments to some of the existing and ongoing research being conducted in an effort to make this screening universal for newborns (below).

You can view a Timeline of events related to federal newborn screening for CCHD recommendations – or read about it Timeline, Background and Fact Sheet.

The Temporary Advocacy Toolkit for Screening for Critical Congenital Heart Defects using Pulse Oximetry is also below.


 

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.

To view newly published findings from the German multicenter pulse ox study:  http://1in100.org/wp-content/uploads/2010/03/Riede-et-al_Germany-Pulse-Ox.pdf

To view the 2009 statement from the American Academy of Pediatrics and the American Heart Association: http://1in100.org/wp-content/uploads/2010/03/peds.PULSE-OX-STATEMENT_2009-1397v1.pdf

 

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: 202-205-5445Or 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

 

 

7 Responses to “Screening”

  1. AnnaMarie,
    Our adopted son was born with TGA, Pulmonary Stenosis, and Double Inlet Left Ventricle (Single Ventricle). We found this out only because the small rural hospital apparently did a pulse ox in a panel of tests prior to circumcision (which they subsequently did not do). So, we are a living testimony to the need for routine pulse oximetry.
    In order to campaign for legislation for this need, do we go to our state legislature or is this something mandated at the national level? I read your article — very well done!
    Thanks for filling me in on what you’ve done!
    Blessings,
    Pam

  2. Pam, I think I may have emailed you already, but I just wanted to thank you again for reaching out. We need as many of these stories as possible. Hopefully I explained the state legislation vs universal screening via HHS stuff in a way that made sense. Let’s keep in touch as things progress up to the May national committee meeting on newborn screening OK? Thanks again! Annamarie

  3. Annamarie:

    I did get your email – thanks so much! I am very interested in being involved but am getting through a few things that came up here. I will be in touch though!

    Tiffany
    tmyttyklein@cox.net

  4. Name (required) 19. May, 2010 at 12:11 am

    our baby had the pulse ox test done after a few hours old she passed with 100% we took our beautiful baby home only to find 10 days later she was going blue and after heart scans found out she was born with tof i feel this test has let our baby down we are lucky to have found out before some think happend to her no body has still not told me why this let her down

  5. Our baby is due in June this year. We were lucky to have our baby diagnosed with Tetralogy of Fallot (TOF) in utero via fetal ultrasounds. I’m looking forward to checking this blog often, as our baby will be going through many tests and ultimately surgery in her first year of life. In response to the previous post… the pulse ox test probably did not work because it was done so soon after birth. In every newborn, there are two openings in the heart that close within a few days of birth. These openings are present in utero and shortly after birth. It is only AFTER these openings close that the extent of TOF (how well the baby is responding) can be fully evaluated. Sounds like the pulse ox was done too soon in your case, leading to biased results.

  6. Coronary Artery Disease (also known as Atherosclerotic Heart Disease) describes a situation in which coronary arteries become clogged as a result of atherosclerosis, meaning a build-up of fat and cholesterol on the arteries’ walls which restricts the blood flow. A build-up like this prevents the heart from pumping adequate amounts of blood to the body or receiving enough blood and it becomes starved for the oxygen and other vital elements it needs to function properly.If not treated, this kind of blockage can cause serious repercussions such as Angina or chest pain and pressure that can amount to a heart attack which will occur when there is a complete blockage and the flow is totally blocked.^

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