1.Holoprosencephaly (HPE for short) is a condition that
affects the brain and the mid-line organs such as the heart,
eyes,
kidneys.
2.It is found in 1:16000 live-born children.
3.There are three types of HPE:
Lobar - where there are two lobes in the brain.
Semi-lobar - where there are two lobes to the rear but not the
front of the brain
Alobar - where there are no lobes at all.
4.HPE can be:
Familial - it can be caused by a genetic problem in one or both
sides of the parental families. This is what your
geneticist is for. If you don't have one, then ask your own
doctor to get you in touch with one.
Environmental - "they" just don't know. Loads of causes
have been sited from dry cleaning fluid to alcohol. The
best thing here is not to blame yourself, and not to worry too
much about cause in the early days.
5.HPE is related to:
Microcephaly - a general term given when the head size of the
child is said to be below the 5th centile of what is
seen to be normal growth. These "centiles" are
different depending on where you live and who calibrated the
ultra-sound scanner. So don't go getting worried too early.
However, if you are scanned and the head of your
baby is found to be significantly smaller than expected, it is a
good idea to have a further set of tests to assess the
liklihood of HPE. DON'T WORRY. Children with small heads can be
just that.... small headed kids.
Hydracephaly - is usually defined as the presence of excessive
cerebral spinal fluid (CSF) within the cranium.
However, this situation is sometimes referred to as dilated
ventricles, and hydrocephalus is restricted for use only
when intracranial pressure is increased. Congenital hydrocephalus
occurs in .3 to .8 per 1,000 births.
Definition from The Independent Holoprosencephaly Support Pages
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