Tag Archives: Pulse ox
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




Official Details: Washington DC Newborn Screening Committee

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.  :)