Thursday, September 22, 2011

It's Official!

Today is an AMAZING day for newborn babies around the country.
Thanks to the incredible advocacy and hard work of some equally incredible people, every newborn baby will now have the chance to be screened for critical congenital heart defects (CCHD).
Congenital heart defects occur in approximately 1 in every 100 live births making them the most common defect in newborns.  Twenty five percent of these defects are considered critical to the point where intervention is required.  While some children are identified prenatally (like our Charlotte), others can go days, weeks, even months without diagnosis.  Unfortunately there are also many other families that first hear the words “congenital heart defect” through a coroner’s report.

It crazy knowing that we do a heal pokes to screen for rare metabolic disorders and hearing tests before discharge from the hospital, but there is 
no screening for a disease that causes up to 3% of all infant deaths within the first year of life.
Until today that is!
I am THRILLED to tell you all today that the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) has voted to recommend that all newborns be screened for CCHD.  This recommendation acknowledges the use of pulse oximetry as a screening tool to help detect heart problems in newborns.  Early detection means less infants sent home undiagnosed.  Early detection means LIVES SAVED.
For those of you that are unfamiliar with pulse oximetry, that glowing red light is from a probe that can be wrapped around the hand or foot to detect the amount of oxygen in a person's blood.  In infants with CCHD, this level is often low (Charlotte's averaged 75-85% after surgery where a normal number is closer to 97-100%.)  The test is SIMPLE, PAINLESS, and VERY INEXPENSIVE.  
So, you might be asking what this means for all of you.  I need you to do me a HUGE favor.  If you are pregnant or know someone who is, PLEASE let them know about this recommendation and encourage them to request a pulse ox test on their newborn before leaving the hospital with them.  Some states will work on implementing this practice on a department of health level, but others will still require further legislation.  States are NOT required to implement screening at this time, despite the SACHDNC recommendation.  PLEASE PLEASE PLEASE help spread the word.
I remember how I felt the day that we learned about Charlotte's heart.  It was a terrible, terrible day, but looking back on it I can see that it was a blessing.  In the words of heart-advocate extraordinaire (and heart mom), Annamarie Saarinen, "The only thing worse than having a newborn diagnosed with heart disease is having a newborn go undiagnosed with heart disease."
Congratulations to everyone who worked so hard to get this to where it is today!


  1. Kristen, how wonderful. I will definitely share this with friends. I have COPD/Emphysema and have a pulse oximeter. Very, very important and especially for a baby with heart problems. It should be mandatory in every State. Thank you for sharing.

  2. Wonderful news! And I second you in congratulating all those who were advocating for this! What a victory!

    -Jessica (Fitzpatrick) Anderson