Congenital Heart Defects
According to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)
Sometimes the defect is so mild that there are no outward symptoms. Some heart defects are simply innocent murmurs which resolve on their own. In other cases, it's so severe that the newborn becomes ill soon after birth. In still other cases, signs and symptoms occur only in later childhood. Severe heart defects often require multiple surgeries, a lifetime of medications and preventative measures to maintain a working heart and a healthy body. For some people, their only hope is a heart transplant.
Statistics
According to the American Heart Association, heart defects accounted for 31.4% of all birth defect related deaths in 1992. From 1986 to 1996 death rates for congenital cardiovascular defects declined 18.2 percent. It is estimated that 300,000 children under age 21 will have congenital cardiovascular disease by 1996; 38% of them will have had one or more surgical procedures. As more children's heart abnormalities are successfully treated, research is needed to meet the medical needs of heart defect patients when they reach adulthood.
At least one-half million children in the U.S. have some form of cardiac problem (excluding high blood pressure). There are approximately one million people alive with congenital heart defects today. (AHA) Heart defects can be part of a wider pattern of birth defects. More than one-third of children with Down syndrome have heart defects. (March of Dimes)
According to the United Network of Organ Sharing (UNOS) in 1997 there were 277 hearts transplanted in children between 0 and 17 years of age. In 1998 70 7 children from 0-17 were listed with UNOS for a heart transplant. In 1998 265 heart transplants were performed. Clearly there is a need to raise awareness of the need for organ donation.
Need for Awareness -- Research
For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects, the most common birth defect. (Children's Heart Foundation)
Congenital Heart Defects -- Cause
According to the March of Dimes, in most cases scientists do not know what causes hearts to be developed abnormally. It does appear that genetics and the environment play a role, but exactly how is uncertain.
Some heart defects have a clear genetic link -- such as Long QT Syndrome -- a cause of sudden death among seemingly healthy individuals. Long QT Syndrome may be present in 1 in 5000 individuals (about 50,000 people in the USA) and may cause as many as 3000 deaths (mostly in children and young adults) each year. But this condition is considerably underdiagnosed. Symptoms to look for? Unexplained fainting (medical term: syncope) and cardiac arrest. (according to the SADS (Sudden Arrhythmia Death Syndrome) Foundation)
One particular virus, rubella (German measles), can cause heart defects if a woman contracts the disease the first three months of a pregnancy. (March of Dimes)
During pregnancy, taking certain drugs such as Accutane (for acne), lithium (for some forms of mental illness), and possibly some anti-seizure medications will increase the risk of having a baby born with a heart defect. Babies born with fetal alcohol syndrome (FAS) often have heart defects. The use of cocaine during pregnancy also increases the risk of birth defects. (March of Dimes)
Certain chronic illnesses in the mother can also increase the risk of heart defects, such as women with diabetes (this risk can be eliminated or controlled if the diabetes is closely controlled starting before pregnancy). Women with a chemical problem called PKU (phenylketonuria) are at risk unless they follow a special diet beginning before pregnancy. (March of Dimes)
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