My son Jacob lived for 3 days before he died.It was only in these 3 days that I found out he had HPE. He was 10 weeks premature, but I had a fairly normal pregnancy.

Needless to say i was devastated and for the last 5 years i have been trying to find out more about the disorder. The doctor tried to explain but what with the jargon and the state of my mind at the time, I didnt take much in. Till today all I had was "HOLOPROSENCEPHALY" written on a piece of paper and I had been able to find nothing in books or the internet. Thank goodness for this site! I now know I am not alone and my heart goes out to all the families who have been touched in some way by HPE.

I am puzzled though, as Jacob had a large head and eyes that were wider apart, but I have only read on this site that the opposite syptoms occur (smaller head and closer set eyes)

I hope one day we will all have answers as to why this occurs, I am sure I am not alone when i say "Why?" is the question i ask myself the most. I was so strict with myself through the pregnancy as I was single and my baby was to be my future, my everything and my all. Still...I would have him and lose him all over again for just another 3 days with him. He has changed my life without knowing.

Thanks to the people who created this site, you are more comfort than you will ever know. Anybody who ever feels like a chat can e-mail me joe@jreucroft.fsnet.co.uk