CHD Information
Congenital Heart Defect Facts
Congenital Heart Defects are the #1 birth defect worldwide
Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
About 1 out of every 100 babies are born with some type of Congenital Heart Defect in the United States
Nearly twice as many children die each year from Congenital Heart Defects in the United States, than from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
Each year approximately 40,000 babies are born with some form of CHD in the U.S., nearly 4,000 of them will not live to see their first birthday, and thousands more will die before reaching adulthood.
More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
Although some research is ongoing, at least 35 defects have now been identified. Little is known about most of these, including what causes them, and how to effectively treat them.
The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion per year
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Congenital Heart Defect FAQ
What is a Congenital Heart Defect?
A congenital heart defect is a structural problem(s) with the heart, present at birth. It is the most common form of major birth defect. CHDs generally occur during very early stages of pregnancy, when the heart is forming – sometimes before the mother even knows she is pregnant. These defects can involve the walls of the heart, the valves of the heart, the chambers of the heart, and/or the veins and arteries near the heart. Congenital Heart Defects range from less severe problems, such as holes between chambers of the heart, to very complex and serious problems, such as complete absence of one or more chambers or valves.
Who is at risk for Congenital Heart Defects?
Anyone can have a child with CHD, regardless of health or any known genetic disposition.
Why do Congenital Heart Defects occur?
Little is known about what causes CHD. Although CHD is presumed to be genetic, few genes have actually been linked to CHD.
How can I tell if my baby/child has a Congenital Heart Defect?
Early diagnosis in-utero through ultrasound can detect some heart defects. This is the best case scenario, as it provides families with time to plan for the possibility of required medical intervention soon after birth. Sometimes however, even severe heart defects can go un-detected until after birth. Some babies are blue or have low blood pressure shortly after birth. Other symptoms can include breathing difficulties, feeding problems, or poor weight gain. Less severe defects are often times diagnosed during a routine medical check-up.
What is the impact of Congenital Heart Defects on families?
Diagnosis and treatment of a child with CHD causes extreme emotional distress, and in many cases can put a financial strain on families. It is important for families to receive professional guidance and pursue specialized medical advice as soon as possible after diagnosis.
Lauren's Diagnosis
Tricuspid Atresia
Tricuspid atresia (TA) is a congenital heart defect that occurs due to abnormal development of the fetal heart during the first 8 weeks of pregnancy. It makes up 1-2 percent of all cases of congenital heart disease and is rare, occurring in only 5 of 100,000 births. The tricuspid valve, normally located between the right atrium and the right ventricle, does not develop properly during pregnancy.
Normally, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, and then is pumped through the pulmonary artery into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, and then is pumped through the aorta out to the body.
In tricuspid atresia, the following occurs:
Improper development of the tricuspid valve. The tricuspid valve does not form at all, and instead a plate of tissue is present in its place. This plate of tissue prevents oxygen-poor (blue) blood from passing from the right atrium to the right ventricle and on to the lungs as it should.
The right ventricle may be undeveloped or underdeveloped.
Openings may be present in the atrial and ventricular walls (atrial and ventricular septal defects), allowing oxygen-poor (blue) blood and oxygen-rich (red) blood to mix with each other.
A patent ductus arteriosus also allows blood to pass through from the aorta to the pulmonary artery and receive oxygen from the lungs.
Treatment of Tricuspid Atresia is palliative only. There is no cure. A child born with TA will never have a "normal" functioning heart. However a series of operations can be performed in the first few years of life that will re-route and optimize blood flow, such that there is sufficient oxygen in the bloodstream to meet the child's primary needs.
Information adapted from:
• Medline Plus (web)
• American Heart Association (web)
• Children's Heart Foundation (web)
• It's My Heart (web)
• Children's Medical Center (web)
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