Feb. 7th, 2012 CHD AWARENESS WEEK:

Today is the official start of CHD awareness week. Each year Feb 7-14 is recognized as CHD awareness week. If your child had it, wouldn't you want to share it? Did you know that congenital heart defects are very common?

Congenital heart defects are conditions present at birth that affect how a baby's heart is made and the way it works. They are the MOST COMMON type of birth defects. In the United States, about 40,000 infants are born with a heart defect each year.

CHD Facts Congenital Heart Defects are the #1 birth defect worldwide Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year) Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms... of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD Though research is ongoing, at least 35 defects have now been identified Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.
Jilly was born with a heart defect called Hypoplastic Left Heart Syndrome. It is considered the most complex heart defect and yet... a newborn can come into this world with this diagnosis and noone even knows.
Baby's are born with a fetal circulation, this helps mask some of the heart defects that are not picked up in a prenatal ultrasound... it can be days or even weeks before anyone knows of the diagnosis because there is not a routine test to check for it at birth or before leaving the hospital. One of the tests, checks the oxygen saturations in their blood by putting a simple bandaid with a special light on it around the baby's toe... it won't pick up all CHD'S, and it is important that the O2 sats. are checked at about day 3 of a baby's life (which is when the fetal circulation starts to close off)... this will pick up many of the possible problems with the heart (sadly, not all)... it will make a difference and some States have accepted it into law, but not all of them yet.
SO ISN'T IT SHOCKING, THAT A BABY WITH HALF A HEART CAN BE BORN AND GO HOME WITH THEIR PARENTS WITHOUT ANY DOCTOR KNOWING THIS!!! WELL IT IS TRUE, IT HAPPENS WAY TOO OFTEN, AND SADLY THE OUTCOME IS NOT AS GOOD WHEN A CHD IS DETECTED SO LATE!!!

So you see, awareness is the key... share this with everyone you know!!!
1 in 100 babies with a CHD... this could be your child, your friend's child, your relative, your neighbor... knowledge about CHD'S will save lives, and will save families from the horrid pain of loosing a child!!!

If you know someone who is pregnant... share this, make sure they are knowledgeable about heart defects, make sure they have routine ultrasounds during pregnancy! Don't be afraid to ask them to double check the heart during that ultrasound. Ask for your baby's oxygen saturations to be checked at birth and prior to going home from the hospital!!! Save a life!!!!