*there's 2 things you can do for your kids

In the spirit of Congenital Heart Defect Awareness Week, I want to make you aware of these two important movements among heart parents.

1. Expectant parents: request a pulse oximetry screening for your newborn. It's an incredibly easy, noninvasive test that will reveal low oxygen saturation. This isn't mandatory but could be very soon in Indiana as well as Tennessee (and probably other states but these are the 2 that I know about). Click here to see the draft of the Indiana Senate bill and click here to see the Tennessee House and Senate version - HB 0373/*SB0065.

Until the pulse ox is made mandatory for newborns the suggestion is this:
Ask for a pulse oximetry screening on your calm baby 24 hours after birth on both an upper and lower extremity.

An oxygen level below 95% indicates further investigation. This doesn't catch all congenital heart defects and a reading below 95% doesn't guarantee there is a CHD either. The point is just to SCREEN.

If the oxygen saturation level is low the second time, an echocardiogram can be performed. This is a sonogram of the heart. And if you're pregnant, you already know that a sonogram is another simple thing that can give you a lot of answers. 

The hope is that doing more of these will prevent sending home babies undiagnosed. If it helps to think about it this way, PKU testing requires 2 heel sticks and it has been part of the mandatory newborn screening for years...despite it being more rare than heart defects. The Tennessee bill noted above has a target date of 1/1/12. If your baby is born sooner than that you have the option of asking for the test. My understanding is that some hospitals do this automatically on all their newborns anyway. Just ask to find out if yours does.

When I say the pulse ox is noninvasive, I mean it doesn't get much easier. Remember me talking about Will's "sats"and this red dot he had to wear on his foot? That is the pulse oximetry monitor. He wore it 24 hours a day in the hospital and still gets his sats checked at every cardiology appointment. Totally painless and simple.

The red dot under the tape with the white cord is the pulse oximetry monitor.

The other warning signs of a possible CHD in a newborn:
rapid breathing
trouble feeding
tiring easily
sweating along the forehead, especially during feeding
dusky color
turning blue


2. Parents of teenagers - consider getting an electrocardiogram for your teen athlete. Parent Heart Watch is a group that is hoping to make electrocardiograms mandatory for student sports physicals. I like this article about it because it explains the pros and cons of screening everyone.

Even if mandatory screenings aren't realistic I think it is nice to know that you can talk to your child's doctor and decide if a voluntary electrocardiogram is right for your child. The Parent Heart Watch website has some other really great information and ideas that could save the lives of young athletes. For example, having more Automated External Defibrillators in public places and training on how to use them. The website is www.parentheartwatch.org.

I hope you feel empowered with this info. It isn't meant to alarm you but can be filed in the "nice to know" part of your brain. If helping others is one of the reasons we were chosen to be Will's parents, then gaining this knowledge and not sharing it would make it all for nothing.

Congenital Heart Defect Awareness Week 2011