Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. HPE is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy (incomplete cleavage of the embryonic forebrain/failure of the prosencephalon to cleave into the cerebral and lateral hemispheres).
There are 4 different forms of HPE, Chloe had the most severe form of HPE called Alobar Holoprosencephaly. Alobar is where the brain is not divided and there are severe abnormalities (there is an absence of the interhemispheric fissure, a single primitive ventricle, fused thalami, and absent third ventricle, olfactory bulbs and tracts and optic tracts).
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. The prognosis for a child diagnosed with HPE depends on the type of HPE and the presence of associated anomalies. It is said that some children with this are born with abnormalities, or facial deformities But our Chloe didn't have any of that, she was perfect, she had mommy's nose, eyes, and as we say the Hart toes, and Daddy's lips, hands, and long legs.
As all of our Drs have told us, HPE has no known cause, and as parents that is the hardest thing to accept. It has been hard to lose our beautiful daughter, but we know that Chloe was given to us for a reason, and we are always going to love her, and her siblings are always going to know her, and know how beautiful she is.
For anyone who would like to read more on HPE here is the website that we've read and got this information from.
http://www.carterdatabase.org/hpe/about/
The silver ribbon is the awareness color for brain disorders.
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