Congenital Heart Defect Awareness Week, GO!

This week, February 7-14, is Congenital Heart Defect Awareness Week. There is a very good chance social media will become bombarded with many individuals and organizations posting to bring awareness to the number one birth defect in the United States.

I am 1 in 100

Currently, the figures for congenital heart defects are as staggering as 1 in 100 births, yet many women of childbearing age are unaware of the risk of having a baby with a defective heart. While in recent years there have been children born to those with celebrity status which has drawn some attention to this medical crisis, it is not enough.

Newborn screening in EVERY state should be MANDATORY, not optional to check with pulse oximetry. While pulse ox does not catch every heart defect it does catch more than doing nothing and it does save lives, this warrants the cost of a $15 dollar test on a piece of equipment that can be reused numerous times. Ask any parent that has found out about CHD from a coroner.

Newborn screening is not enough, however. We need to know how to prevent congenital heart defects and in order to do that we have to find out how they happen. Research needs to be funded. With the community that has formed in part to the accessibility from the internet, genetic links should be able to be established along with environmental and nutritional clues.

We can not stop with screening, we have to press on and move further. We have to look at the future. The survivors today will have children tomorrow and those children will need answers.

Tennessee Pulse Oximetry Bill

I would like to share that Karin Coulter with Saving Little Hearts has led a magnificent effort in the state of Tennessee to push for newborn screening with the pulse oximetry.

Both the TN House and Senate are moving forward on the bill to screen newborns in the state of TN. http://wapp.capitol.tn.gov/apps/BillInfo/Default.aspx?BillNumber=HB0373&ga=107.  If you are not in TN and want a law in your state please feel free to copy our bill, send it to your state legislators and ask them to file a bill as well.

TN residents that want to help with the pulse ox bill: Please contact your legislators and ask them to co-sign/support HB 0373/*SB 0065. Go to http://www.capitol.tn.gov/legislators/ to find your legislators. The more people that sign on the better the bill will do. Thanks to Ryan Haynes for introducing it in the House and Doug Overbey for introducing it in the Senate.

Cora's Law - Pulse Oximetry

I feel this is a perfect story to feature today. The life of little Cora is one that has made an impact.

When Cora was born, she was beautiful and looked perfect. Everything about her was beautiful and her parents were madly in love with her. When she was five days old their lives were shattered though because an undetected congenital heart defect took her life.

The road has been difficult for her parents, but Kristine and Ben have decided to bring awareness and to do what they can so that no other family has to find our about congenital heart defects from the coroner. I highly encourage you to visit Cora's Story and read her entire story.

Right now, I want everybody that reads this to forward to everybody they know in the state of Indiana. Because of Kristine's advocacy about screening for congenital heart defects and contacting state senators there is a bill currently in committee that will mandate pulse oximetry screening on every newborn in Indiana. (Indiana Senate Bill 552, authored by Senator Brent Waltz)

Kristine has a post about writing the senators that are reviewing this bill here... Writing Senators in Support of Bill 552  And you can read the bill here ... Indiana Senate Bill 552

For those of you that are not in Indiana, that does not stop you from writing your own state senators and letting them know how important the pulse oximetry screening is. While it does not detect EVERY heart defect, it detects more than doing nothing.

Take advocacy into your own hands and bring awareness to congenital heart defects.

Newborn Screening Pulse Oximetry

I was elated when I saw the status on Cora's Story at Facebook that pulse oximetry has been voted YES to be added to the newborn screening.

For many children with a congenital heart defect it can be detected by the use of pulse oximetry. It is a non-evasive test that takes only a minute or two.

It does not detect ALL CHDs but it detects a lot more than would be detected without it. It also can detect the defects sooner than other methods.

For more information on the Vote check out Blog4CHD