We were told that there wasn't a specific support group or any kind of official information. The only thing we were given was the diagnosis and a very bleak prognosis and then it was down to us to do our own research. This is what we now know.
What is Holoprosencephaly?
It is a congential cephalic disorder. Which in non-medical language means that it is abnormal development of the brain which happens before birth.
The following description is from the Families for HoPE website:
Ho•lo•pros•en•ceph•a•ly 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.
Again taken from the Families for Hope website:
(1) Alobar (severe) – where the brain is not divided and there are severe abnormalities.
(2) Semi-Lobar (moderate) – where the brain is partially divided and there are some moderate abnormalities; where there are two hemispheres in the rear but not the front of the brain.
(3) Lobar (mild) – where the brain is divided and there are some mild abnormalities.
For more information on Holoprosencephaly visit the full Families for Hope site here: Families for HoPE