What is HPE?

HPE is briefly discussed in our ‘About’ section, but if you are new to this term, you may find yourself wanting to know more! Well, look no further, because we have an explanation for you!

Ho•lo•pros•en•ceph•a•ly \ho-lo-PROS-en-sef-a-le\ is a congenital brain disorder caused by a failure of an embryo’s forebrain to divide to form bilateral cerebral hemispheres (the left and right halves of the brain), causing defects in the development of the face and in brain structure and function.  According to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, “It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life.”

HPE is a condition without a cure or a standard course of treatment.  Treatment for HPE is symptomatic and supportive.  Individuals with HPE can also have secondary conditions such as mental retardation, epilepsy, diabetes insipidus, pituitary and hormone disorders, movement disorders, gastroesophageal reflux, respiratory disorders, and hydrocephalus.

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