CHD Awareness Week

Today is the first day of Congenital Heart Defect Awareness Week (February 7-14) and in honor of this week, Carlie and the many children who are living with or have lost their life to a CHD, I would like to share some information with you and ask that you share it with others around you.


*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Downs Syndrome).

*1 in 10 of those born with a CHD will have a fatal defect.

*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

*There are approximately 35 know Congenital Heart Defects.

*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

*Only about 30% of the children who need a heart transplant receive one in time.

*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.



I recently came across some open heart surgery videos and thought that some of the heart families out there might be interested in seeing them (they might be too graphic for those with a weak stomach). The videos are of the Norwood and Fontan (stage 1 and stage 3 palliation) that are performed on a HLHS/HRHS child and were done at Miami’s Children’s Hospital.

Norwood:



Fontan:





Please help spread awareness…there are too many children born each year with a CHD and far too many children that lose their battle. Congenital Heart Defects need more funding for research, more education and more exposure in the media…what if your child was born with a life threatening defect?