1in100

Oh my.  Just got this today – we understand the newsletter also goes to pediatricians and cardiologist around the country.  So proud of our little Eve.  She has done some wonderful things in her short time here…thank you University of Minnesota Amplatz Children’s, Mayo Health System, Children’s Hospitals, Regions Hospital and Minnesota Department of Health for all you have done to make sure babies don’t go home with undiagnosed heart defects.  Rockstars.  All of you…

file:///Users/annamarie/Desktop/UMACH_CVHeartCenter_v5.pdf

For those following the pulse oximetry newborn screening bill in Nebraska, information is in the article below.  I spoke to Senator’s office last week to see where are at.  In a nutshell.  First, let me say I believe this legislation was introduced in Nebraska with all the best intentions.  I commend the Klein family for doing all they can to help protect other families from missed and delayed diagnosis of CHD.

Next, the bill is stuck in committee and will likely stay there.  Officials intend to hold hearings and do study on the subject over the summer and potentially reintroduce in 2011.

Senator Rogert’s office was NOT aware of the newborn screening protocol making its way through the national committee.  They were thrilled to hear that if/when HHS makes a formal recommendation for screening with pulse oximetry, it will be easy work for states to pass “supportive” language that ensures each state’s hospitals are implementing screening (this is exactly how things worked when universal hearing screening took effect).

http://www.midwestmessenger.com/articles/2010/03/13/burt_county/news/news04.txt

I’m attaching a PDF explaining how this all went down with hearing screening – for those interested.  Basically, history shows you achieve a rather prompt 50% hospital adoption rate as soon as Health and Human Services makes its recommendation that all babies be screened for something (in our case CCHD).   Things are a little different when conditions are added to the genetic screening panel.  By law, these recommendations from HHS are automatic “mandates”…which means no additional laws need to be passed at the state level.  Here in lies the difference.  Newborn screening is conducted by Department of Health labs and their workers.  It  is already within the government’s role.  Physical screenings, such as hearing screening – and soon, screening with pulse oximetry – are conducted by the HOSPITALS themselves, and hospital staff (in our case, labor & delivery nurses).  This requires state mandate to “officially” authorize.

Again, the reason the process works is that having been vetted by the committee and peers in medicine, hospitals and practitioners are already on board to adopt a recommendation once it’s been handed through HHS.  The state legislation helps hospitals get over the transitional hump of adoption though.  Basically, you can’t lag behind in implementation – and often the state laws provide appropriate, supportive tools to hospitals to aid them in deploying  a new screening.

Don’t forget, screening with pulse oximetry is only the SECOND physical screening to be suggested for universal adoption.   It actually took much longer for hearing screening.  We are in a good place.  Screening for severe jaundice is most likely the next one up for consideration.

I share this as a way of encouraging all of us to stay consistent with our mission and messaging to hospitals, physicians, policy officials and the general public. We know how many babies are affected by congenital heart defects and heart disease.  Today, the tide has turned in favor of identifying them sooner – improving outcomes and saving lives.  It’s actually an amazing thing.