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).
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:
I. INITIAL OUTREACH TARGETS
State Departments of Health
Newborn Screening and/or birth defect surveillance divisions
Hospital Medical Staff – contacts
Newborn nurseries/Labor & Delivery
Chief Financial Officer
Nursing Executive Leadership
Patient Safety/Patient Care
AAP – State Chapter leadership – AAP Chapters
America Heart Association (state chapter)
Pediatric Heart Organizations /Sites (some with State Chapters)
Mended Little Hearts
It’s My Heart
Congenital Heart Information Network
Bless Her Heart
Children’s Heart Foundation
BabyCenter Community: Babies and Children with Heart Problems
Helping Hands, Healing Hearts
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
III. FEDERAL RECOMMENDATION – NEWBORN SCREENING FOR CRITICAL CONGENITAL HEART DISEASE (using Pulse Oximetry)
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”
Use this link to find your delegation, with emails and phone numbers:
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
The online CHD community is powerful. Utilize the following resources to mobilize, gather and share information:
Pulse Ox Please
Check Their Hearts: Support Pulse Oximetry Screening for Heart Defects
Pulse Ox Pennsylvania
Pulse Ox Mississippi