Congenital heart disease (CHD) is a problem with the heart’s structure and/or function which is present at birth.
February 7-14 is Congenital Heart Disease Awareness Week, and we’re doing something about it.
March of Dimes and the American Heart Association, along with affected families, are advocating for a bill (HB 2693) to add screening for critical congenital heart disease (CCHD) to the newborn screening panel via pulse oximetry. CCHD means that the heart defect causes severe, life-threatening symptoms and requires intervention (e.g., medical treatment or surgery) within the first few hours, days, or months of life.
Some hospitals in Oregon are already screening for this, but some aren’t. We think it shouldn’t matter what zip code you’re born in, every baby deserves a healthy heart.
You can come to the public informational hearing this Friday, February 8th, from 1:00 to 2:30 pm at the State Capitol Building where the House Healthcare Committee is meeting.
There will also be a hearing in the Senate on Valentine’s Day.
To learn more or see if you can help, call our Director of Programs and Public Affairs, Joanne Rogovoy, at 971-270-2885 or email her at jrogovoy@marchofdimes.com.
I totally support this measure!!
I am an Oregon state Co-Representative for CHERUBS, the worlds largest & oldest charity supporting children born with CDH (Congenital Diaphragmatic Hernia). In addition, I and many members of my family are affected by Marfan syndrome, a connective tissue disorder that can have devastating heart complications in people of all ages, including the littlest babies.
There are a many CDH’ers that also have Congenital Heart Defects in addition to the CDH, and there are also a small subset of CDH babies who’s CDH condition is so mild they escape detection until much older when pressure on the heart & other organs cause them to need medical attention. With a test like this a stressed heart from undiagnosed CDH might be caught earlier, leading to quicker detection & correction of the underlying defect as well as preserving heart function.
In addition with some rare cases of Marfan syndrome, babies can be born with hearts already struggling yet go undetected on prenatal screens, costing valuable time they could use to get early & aggressive treatment. Not only could CHD’ers but Congenital Diaphragmatic Hernia & Marfan babies be saved by this screening, and I am sure there are other conditions with similar issues who could be saved as well!
This procedure takes so little time yet has the potential to save many. We learned early detection of PKU can save children a lifetime of disabilities and is much rarer & less deadly than CHD. We need to do every thing we can to give ALL precious babies a chance at a good, long healthy life!!!
Shelly Moore
CHERUBS Oregon Co-Rep, 2011 – Present
http://www.cherubs-cdh.org/
Current Oregon state Telephone Support Contact & former President of the Oregon Chapter of the National Marfan Foundation (NMF) 1997-2005
http://www.marfan.org