Thursday, February 9, 2012

CHD Awareness Week Proclaimed in Florida


It's Congenital Heart Defect Awareness Week. Each year from Feb. 7-14, the congenital heart community pushes extra hard to raise awareness of congenital heart defects. All over Florida, our heart moms and heart dads, heart kids and heart grown-ups, tell their stories of diagnosis, surgery and treatment, and of courage and strength. We've created a fact sheet for you, if you want more information about congenital heart defects.

So many people will stay to us, "I don't know how you've managed; I don't know if I could do it." And our answer often is, "You manage. You find a way. You have to." 

To all of our heart heroes and our heart angels, to all of our heart parents, siblings, grandparents, aunts, uncles, cousins, friends and admirers ... to all of our physicians, our nurses, our social workers, our therapists, our caregivers ... 

WE LOVE YOU WITH ALL OUR HEARTS!

Florida Gov. Rick Scott officially proclaimed Feb. 7-14 as
Congenital Heart Defect Awareness Week.

Wednesday, February 8, 2012

Pulse Oximetry: Newborn Screening for Congenital Heart Disease

Pulse oximetry helps detect congenital heart defects
when performed at some point after 24 hours of life.
It is painless, noninvasive and practical.
The Florida Legislature has been considering Senate and House bills that would require hospitals throughout the state to add critical congenital heart disease (CCHD) to the panel of 35 newborn screening tests that Florida hospitals already do after a child is born.

The test they would add is called pulse oximetry and it is an inexpensive, painless, noninvasive way to increase the likelihood of hospital staff to detect CCHDs in newborns.

Early diagnosis and treatment of congenital heart defects greatly improves a baby's chances of leading a healthy, typical life. Delayed diagnosis can lead to death or injury to babies. According to the American Academy of Pediatrics, numerous studies show that adding pulse oximetry to the newborn assessment can enhance CCHD detection of CCHD. 

As children, parents and loved ones affected by CHD, we all understand on a first-hand basis the effects of CHD. This legislation presents us with an opportunity to help educate our elected officials on the prevalence of CHD and on pulse oximetry as an inexpensive, painless, noninvasive way to increase the chances of physicians detecting CHDs in newborns. Most importantly, we can ask them to vote yes to help increase positive outcomes for affected newborns and their families. 

If you would like to contact your Florida legislator and tell him/her to support SB 1052 and HB 829, here's how you can do it.  

Please take a moment to copy, paste and personalize the letters below and send them via email to your senator and representative. The highlighted sections are the areas that will require you to either fill in additional information or personalize.

If you do not know who your legislators are, you can find out by clicking this link and entering your address

Sample Letter to Senator   

The Honorable [Senator name]
Florida Senate
Address

Dear Senator[name]:

My name is [name] and I live in [city] in your district. I’m asking you today to vote yes on Senate Bill 1052, Newborn Screening for Congenital Heart Defects, which would require pulse oximetry screening for every newborn. This inexpensive screening will save lives and improve the outcomes for hundreds of babies born with broken hearts.

[Insert your story here. Try to keep it to five or fewer sentences. If pulse oximetry helped to diagnose your child, say that]

Pulse oximetry helps detect congenital heart defects when performed at some point after 24 hours of life. It is painless, noninvasive and practical. Hospitals already have the equipment, and, in most cases, it takes less time to perform the screening than it does to change a diaper. Similar bills have been passed in Maryland, New Jersey and Indiana, and many other states are considering pulse oximetry screening laws.

Thank you, [Senator name], for taking the time to read this letter. I look forward to hearing the results of the vote. Again, please vote yes on Senate Bill 1052.

Sincerely,

[Your name]


Sample Letter to Representative

The Honorable [Representative name]
Florida House of Representatives
Address

Dear Representative [name]:

My name is [name] and I live in [city] in your district. I’m asking you today to vote yes on House Bill 829, Newborn Screening for Congenital Heart Defects, which would require pulse oximetry screening for every newborn. This inexpensive screening will save lives and improve the outcomes for hundreds of babies born with broken hearts.

[Insert your story here. Try to keep it to five or fewer sentences. If pulse oximetry helped to diagnose your child, say that]

Pulse oximetry helps detect congenital heart defects when performed at some point after 24 hours of life. It is painless, noninvasive and practical. Hospitals already have the equipment, and, in most cases, it takes less time to perform the screening than it does to change a diaper. Similar bills have been passed in Maryland, New Jersey and Indiana, and many other states are considering pulse oximetry screening laws.

Thank you, Representative [name], for taking the time to read this letter. I look forward to hearing the results of the vote. Again, please vote yes on House Bill 829.

Sincerely,

[Your name]