Congenital Heart Defect Awareness Week 2/7-2/14

Did you know that this last week was CHD Awareness Week? Have you noticed all the TV personalities wearing red? Here is some info on it.

(Picture taken while at Children's Hospital after her first surgery)

An estimated one in every 100 children born in the United States each year have a malformed heart, making it the most common birth defect. "Few people realize more babies are born with congenital heart defects – approximately 40,000 – than with Spina Bifida, Down's syndrome and hearing loss. Yet, heart defects are sometimes overlooked and not routinely diagnosed in newborns."

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.
• It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.*
• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.
• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

(Picture taken at one of her Cardiology Appointments.)

• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.
• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists.***
• The Congenital Heart Information Network (http://tchin.org) is the only organization of international scope dedicated to meeting the needs of families and individuals affected by CHD.

(Picture taken before her last procedure. She had an emergency heart cathedarization 9/06 & we've been hospital free since then!)

Info taken from http://tchin.org/aware/index.htm.
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