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/

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One Response to “Progress.”

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