Resources

Congenital Heart Defects Facts 

What is a congenital heart defect?   

Congenital heart defects/disease are structural problems with the heart that are present at birth. Congenital Heart Defects range in widely in severity from simple problems, such as “holes” between chambers of the heart, to very complexed malformations, such as a total absence of one or more chambers or valves. 

Who is at risk to have a child with a congenital heart defect?
Anyone can have a child with a congenital heart defect. One out of every 100 births, will have some form of congenital heart disease . If  family members or yourself  have already had a baby with a CHD, your risk of having a baby with heart disease may be higher.   

Why do congenital heart defects occur?
Most of the time it is unknown.  Although it can be caused by a genetic disorder such as but not limited to: Down’s Syndrome, DiGeorge Syndrome, or Vel-cardi-facil Syndrome.   

How can I tell if my baby or child has a congenital heart defect?
Severe heart disease generally becomes evident during the first couple of months following the birth. Some infants are blue or have very low blood pressure minutes after birth. Other CHD’s cause breathing difficulties, feeding problems, or poor weight gain, bluish limbs.  Minor defects not always cause symptoms. While most heart murmurs in children are normal, some may be due to defects.   

How common is this in children?
Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. In 2005, 192,000 life-years were lost before age 55 in the United States due to congenital heart disease. In 2004, hospital costs totaled $2.6 billion.   

How well can people with congenital heart defects function?
Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or almost normal lives. For more complex defects, limitations are very common. Some children with CHD can have developmental delay or other learning difficulties.   

References
American Heart Association. Congenital cardiovascular disease. Heart and Stroke A-Z Guide. American Heart Association, 2000 

Online Resources

 

    

The Children’s Heart Foundation

The Children’s Heart Foundation has a wonderful PDF book that you    can download or read online. It’s called “It’s My Heart” and a must read for ALL CHD PARENTS. I t describes Heart defects in an easy to understand way.

http://www.childrensheartfoundation.org/                 

 

Congenital Heart Defects Families

                               Helping CHD families with support and resources.

                                             http://www.CHDfamilies.org

 

                                                  

                                                Saving Little Hearts

A wonderful Organization that we receive our basic Care Bags from at a great price so that we can serve more families!

                               http://www.savinglittlehearts.org/

 

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