HELP CHD INFORMATION

Congenital Heart Defects (CHD)

What is a chd?
Congenital Heart Defects are birth defects of the heart. When the heart is forming, it twists and turns. Sometimes in the process, it doesn't form the way it should causing a defect. The heart is already forming before the mother even knows she is pregnant. Defects range in severity from simple defects, such as Ventricular or atrial septal defects, (Which is a hole between chambers of the heart), to very severe defects, such as one or more chambers not developing at all. There are 35 different types of chds.

How does this happen?
In most cases, scientists do not know what makes a baby's heart defect develop. Some environmental factors are involved including women who contract rubella during the first three months of pregnancy are at high risk and some other viral infections may also contribute. Certain medicines also increase the risk of having a baby with a congenital heart defect. These include:
Accutane (acne medication)
Lithium (used to treat certain forms of mental illness)
Certain anti-seizure medications (possibly)
Drinking alcohol or using cocaine in pregnancy also can increase the risk of heart defects.

Certain chronic illnesses in the mother can also increase the risk of heart defects. For example, women with diabetes are at increased risk, although the risk can be reduced or eliminated if the diabetes is closely controlled, starting before pregnancy. Women with Phenylketonuria (PKU) are also at high risk, unless they follow a special diet before pregnancy and during the first trimester. Several studies suggest that women who do not consume enough of the B vitamin folic acid before and during the early weeks of pregnancy are at increased risk of having a baby with a heart defect.

Inherited characteristics play little part in causing congenital heart defects. However, after having a child with a chd, your risk is slightly higher. "In fact, scientists have recently discovered more than 100 mutations (changes) in more than a dozen genes that directly impair the heart. many of these mutations cause cardiomyopathy (enlargement of the heart) or heart rhythm disturbances that can be fatal in childhood, adolescence or adulthood." However, scientists also have pinpointed several mutations that affect the formation of the heart, leading to congenital heart malformations. For example, in 1999 a March of Dimes grantee at the University of Texas Southwestern Medical Center in Dallas discovered a gene that appears to contribute to a common, important group of malformations affecting the heart’s outflow tract and the blood vessels arising from it. Researchers at Harvard Medical School identified a gene responsible for the heart defect called atrial septal defect (a hole between the upper chambers of the heart) in four families with multiple members affected by heart disease. The same researchers also identified another gene mutation that causes atrial septal defects accompanied by arm and hand malformations (Holt-Oram syndrome). Researchers appear to be on the brink of discovering the genes that underlie numerous heart defects. They have recently identified several genes that direct development of the embryonic heart in mice. This should greatly improve our understanding of these human counterparts—and possibly lead to ways to prevent the various heart defects that mutations of those genes may cause.

(March of Dimes)

About 20% of congenital heart defects are syndrome related. This means that a heart defect may accompany a syndrome such as Velo Cardio Facial Syndrome (V.C.F.S.), Trisomy 21 (Downs), Turner, Noonan, Alagille, Marfan and Williams syndromes.

In about 80% of cases a heart defect is usually a chance occurrence in the complex development of the heart. Which means that they don't have a reason or a cause. There are surgeries that can be done to help with CHD, but they are risky and may not always work. However, most chds are mild and may not require any surgery at all. While we have come a long way, we need so much more. There is "NO" known prevention of CHD's and that's what we need! You can help by raising awareness or money for much needed research.

How often does it occur?
Most say it occurs in 1 in 100 live births, but the information given to come up with this number isn't exactly accurate. (Not all cases get reported) So, some say that it is really more accurate to say that 3 to 4 out of every 100 babies born are born with some sort of congenital heart defect. On average, there are 40,000 babies born in the U.S. each YEAR with a congenital heart defect. I calculated that out to be nearly 5 babies every hour is born with a chd! Of those babies born with heart defects, 1 in 10 of those babies will have a fatal congenital heart defect. sadly, at least 11 babies will die every day from chd. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher. It is estimated that over 1,000,000 Americans have a congenital heart defect.

What are the symptoms?
Severe heart defects are usually diagnosed shortly after birth (within the first 3 months). Some are diagnosed while the mother is still pregnant through ultrasound. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. some will tire more easily, especially after feeding. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects. (American heart association)

What can be done?
Today, most heart defects can be treated. Some require surgery, medicine or artificial valves or pacemakers. Half the children who require surgery do so before their second birthday. Early corrective surgery often prevents development of additional complications and allows the child to live a more normal life sooner. However, with surgery comes numerous possibilities of complications and these should be reviewed and discussed with your doctor.

Is the problem serious?
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. Over 91,000 life years are lost each year in the U.S. due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone. (American heart association)

Is the research being done now enough?
Not nearly enough. Compared to adult acquired heart disease, less information is known regarding optimal treatments and outcomes for most congenital heart defects. Although nearly twice as many children die each year from congenital heart disease compared with childhood cancers, funding for pediatric cancer research is 5 times higher than for congenital heart disease. (American heart association)

Disclaimer: The contents of this site are presented for INFORMATIONAL purposes only, and should NOT be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.

What the world says about heart and concerning defects
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