Today, May 4, is Heterotaxy Awareness Day. Until 2 years ago I had never heard of Heterotaxy, most people who's children are diagnosed have also never heard of it. I was surprised to learn that 1 in every 10,000 babies born will have Heterotaxy Syndrome.
What exactly is Heterotaxy Syndrome? It is a disorder that results in certain organs forming on the opposite side of the body. Development of multiple organs are affected including but not limited to the heart, liver, lungs, intestines and spleen. The exact cause is still unknown but the symptoms are a result from the way the internal organs turn into position during fetal development.
A few more facts:
*Heterotaxy is a congenital condition with no cure
*No 2 cases are the same; which makes care difficult
*It is not a Congenital Heart Defect but often causes heart defects
*Corrective surgery is often needed, sometimes within hours of birth
*Heterotaxy is equally common in boys and girls
*Heterotaxy occurs in all ethnic groups
Currently Heterotaxy can be detected in utero (before baby is born) but due to limited knowledge it can be missed or go undetected until after birth. Research and awareness of Heterotaxy are necessary for early diagnosis and improved treatments.
To learn more about Heterotaxy Syndrome and how you can be a part of raising awareness visit Heterotaxy Connection
