What is Heterotaxy?

Heterotaxy syndrome is a rare birth defect that involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.”

There are different forms of heterotaxy syndrome. All usually involve heart defects of varying types and severity. 

Heterotaxy syndrome is a disorder that results in certain organs forming on the opposite side of the body. It also has been known to affect the development of the heart, liver, lungs, intestines, and spleen. Babies with heterotaxy syndrome are usually first identified because they have structural problems with their hearts or liver.

Out of 1,000,000 babies born, there will be 4 with Heterotaxy Syndrome. That is according to The National Center for Biotechnology Information which is a part of the United States National Library of Medicine, a branch of the National Institutes of Health. Other sources are indicating that the prevalence may now be in fact 1 in 10,000. 

Heterotaxy Info Slides

Congenital Heart Defects Facts

  • Approximately 40,000 babies are born in the U.S. with a CHD each year
  • More than 50% of all children born with a CHD will require at least 1 invasive surgery in their lifetime
  • Nearly 2x as many children die from CHD’s that from all forms of childhood cancer combined
  • Congenital Heart Defects are the most common birth defects in the U.S
  • By the 28th day of pregnancy, the baby’s heart is formed. A CHD occurs usually before a mother knows she is pregnant
  • Each year over 1 Million babies are born worldwide with a CHD. 
  • 100,000 of them will not see their first birthday and thousands more die before they reach adulthood
  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities
  • There are an estimated 2-3 million CHD survivors in the U.S
  • 91,000 life years are lost each year in this country due to congenital heart defects
  • The cost for inpatient surgery to repair CHD exceed 2.2 billion a year
  • There are more than 40 types of CHD. There is no known prevention or cure for any CHD
  • In the last decade death rates for CHD have declined by almost 30% due to advances through research
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed towards congenital heart defect research
  • Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe CHDs are less likely to reach adulthood
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive
  • People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke
  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions
  • A baby’s risk of having a CHD is increased by 3 times if the mother, father, or sibling has a CHD
  • Compared to the general population, adults with CHD have 3 – 4 times higher rates of ER visits, hospitalizations, and Intensive Care Unit stays
  • Congenital heart defects are America’s and every country’s #1 birth defect.
  • Nearly one of every 100 babies is born with a CHD
  • Congenital heart defects are the #1 cause of birth defect related deaths
  • Congenital heart defects are the leading cause of all infant deaths in the United States
  • For the first time, more than 50% of the CHD survivors are adults
  • 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year
  • In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined
  • Funding for pediatric cancer research is five times higher than funding for CHD
  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease
  • The NHLBI has stated that Congenital Heart Defects are a serious and under appreciated global health problem

CHD AWareness Week Info Slides


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