Tag Archives: pulse oximetry screening
Progress.

Progress.

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/

In recognition of National Birth Defects Prevention Month, CDC has been posting  articles on its home page throughout the month related to birth defects. The first feature was highlighting congenital heart defects – check out the CDC homepage: http://www.cdc.gov/Features/HeartDefects/.  Another note, the CDC is playing an important role in the development of implementation guidelines for routine pulse oximetry screening of newborns to detect Critical Congenital Heart Disease.  Their role in monitoring screening results and outcomes will be pivotal in finding CHD patterns that may be linked to geography or other environmental factors…in other words – research and monitoring come together to target the problems and find solutions to hammer away at CHD.  Good news for the 1in100 touched by this destructive disease.

Congenital Heart Defects
January is National Birth Defects Prevention Month. Congenital heart defects, one of the most common types of birth defects, affect nearly 1% of all infants born in the US. Learn more.

Understanding Congenital Heart Defects
Congenital heart defects are conditions present at birth that affect the structure and function of the heart. They are a leading cause of infant death from birth defects during the first year of life.1 In 2004, hospitalization costs for congenital heart defects among people of all ages totaled $1.4 billion.2 CDC works to identify causes and prevention opportunities for birth defects, including congenital heart defects, by applying a public health approach that incorporates three essential elements: surveillance or disease tracking, research to identify causes, and prevention research and programs.

Surveillance of Congenital Heart Defects
To track congenital heart defects, CDC has established state-based birth defects surveillance systems. Today, 31 states include congenital heart defects in their birth defects monitoring efforts. Information obtained from these systems is used to:

Understand the characteristics of affected children
Identify health disparities in the occurrence of congenital heart defects and survival of those affected
Plan for services across the life span
Help to ensure that children with congenital heart defects receive necessary medical care and services.

In addition, information from surveillance systems provides a basis for research studies designed to identify potential causes and opportunities for preventing congenital heart defects and promoting the health of affected people.

Identifying Preventable Causes
CDC coordinates the largest population-based effort in the U.S. to identify the preventable causes of birth defects: the National Birth Defects Prevention Study. Population-based studies like this one evaluate the occurrence of disease across a wide group of people, which is important to make sure that study results are applicable to the US population.

Recently, CDC’s study collaborators have reported important findings about some pregnancy exposures that increase the risk for congenital heart defects:

Obesity – women who are obese before pregnancy were shown to have an increased risk of having a pregnancy affected by a congenital heart defect;
Diabetes – women with diabetes diagnosed before pregnancy are more at risk of having a child with a number of birth defects, including congenital heart defects;
Smoking – women who smoked anytime during the month before pregnancy through the end of the first trimester were more likely to have a pregnancy affected by a congenital heart defect.

Next Steps in Preventing Congenital Heart Defects
CDC’s unique ability to study the occurrence of disease in the population holds promise for identifying risk factors for congenital heart defects that can be translated into prevention strategies. Although researchers are learning more about congenital heart defects, much work remains. For example, researchers are:

Investigating the possible effects of other common exposures, such as maternal fever, infection, and medications.
Exploring approaches to decrease the number of women with uncontrolled diabetes during pregnancy to prevent congenital heart defects as well as other major birth defects.
Evaluating long term outcomes, health care costs, and quality of life to identify opportunities that will support the health and wellness of children and adults affected by congenital heart defects.

CDC’s research on the causes of heart defects highlights the need for birth defects prevention strategies for women of childbearing age. Reducing obesity, providing better control of diabetes, and preventing tobacco exposure during pregnancy are all actions we can take today that hold promise for preventing congenital heart defects.

Rockstar Epiphany

Rockstar Epiphany

In this first year of Eve’s life, we have come to this epiphany.  In our daughter’s cardiologist, we found medical nirvana.  He has been smart, savvy, pigheaded (as needed), caring, proactive, collaborative.  Many days, we would see this man at 7 am – and again at 7 pm.  If we emailed or called or paged at 11 pm, we’d still get an immediate response.

Most importantly, it seemed like he treated our baby as he would treat his own child.  I never asked if that’s how HE really felt (that would be weird…), but it’s how he made US feel.

That is a very special gift.  Not every pediatric physician possesses it.  That’s why it’s so special to see glimpses of that pervasive caring as people name their 1in100 Rockstars http://1in100.org/rockstars/.

I will say this.  When it was time to schedule surgery, Eve’s heart only had a few weeks left.  The team at our hospital was outstanding.  And that’s why we were able to bring Eve to another hospital 2,000 miles away.  Because in their caring, compassionate, collaborative way – they knew Eve’s case was unique.  And that she was in the best hands with one of their peers.

Accolades aren’t enough.  That takes not only special doctors, but a special hospital.  Just this week, I wrote a letter to the University of Minnesota Amplatz Children’s Hospital.  We never formally acknowledged the amazing, selfless decisions that allowed our baby to live and thrive.  I hope they know how important this is.  That they are the model for how hospitals can, should and WILL be practicing in years to come. I might add that the doctors we’ve come to know during this journey are still committed allies.  Now joining together to tackle such challenges as universal pulse oximetry screening, pediatric heart device development and real-time clinical information exchange for the youngest patients.

When it comes to saving and protecting lives, there should be no hospital borders, no state borders, no country borders.  The medical community is just that – a community.  Neighbors, keep helping each other.  That’s what makes a Rockstar.