Most people have never heard of Holoprosencephaly; we certainly hadn't. In fact, it doesn't even come up if you run a spell check in MS Word or online! However, since our baby's diagnosis at our 18 week ultrasound, it feels like our lives have been consumed by learning as much about this rare condition as possible.
HPE is a neurological disorder caused by the brain failing to separate in the 3-5th week of gestation. Our Abby had developed this before we even knew we were pregnant. It causes defects in the development of the face and in the brain structure and function. Please follow this link for an explanation of the disorder and the four classifications: FFH- What is Holoprosencephaly?
If you are interested in learning more about HPE, or if you're just curious about children who are living with the condition, we strongly suggest that you check out the Families for HoPE website. Families for HoPE, Inc is a non-profit organization that offers support, information, education and fellowship to families affected by HPE. Their website provides a good deal of information, if you're interested. We're very grateful to them for the support they've shown to us since we first received our diagnosis.
The statistics related to this disorder are very, very grim. It is estimated that 97% of fetuses with this condition result in miscarriage, and of the 3% who do have a live birth, more than 50% pass within 6 months. In spite of this, there are children beating the odds, living happy lives. Naturally, they have a Group on Yahoo, which we've joined :) We've learned a great deal from them about what it's like living day to day with this disorder. While it's certainly a challenge, they've given us HoPE for what is possible; really they've shown us that anything is possible. The spectrum of possibilities is far to vast for us to speculate what might be the case for our Abby. So, we will just have to wait and see what she has in store for us.
