Thursday, June 14, 2012


I've been sharing my story with a few more people here and there lately.
The Tessier Cleft portion of my story. I know I have to clarify since there's much more to me then just one thing! Lol.

Anyway, a friend of mine was telling me that her sister had looked up some more info on Tessier Clefts and that my stats may need an update to 57 people born in this country with clefts. If that's the case I'm not sure what world stats would look like.

I started doing some research of my own tonight and came across something that is more than a little disturbing to me.

Ovbiously I was too young to remember what happened to me/how I came into the world etc.
Even my doc said: "You were born with a bilateral craniofacial cleft." but he didn't name it "Tessier". I discovered that on my own. This means that though there are 14 classifications for Tessiers, I don't know what number mine falls under. I know it is a severe one, but I do not know it's number.

Anyway, I was reading about Tessier Cleft classifications 3 and 4, two of the rarest of the rare where Tessiers are concerned.

The article is titled:
Formatting the surgical management of Tessier cleft types 3 and 4

In it, the writers state that if the inferior globe of the eye is not being protected the cornea must be covered in order to help prevent blindness. If not, the eye can sink and this will lead to blindness.

I realize this is all just reading and me casting about in the unknown, but because I was born in 86 and spent 4 and a half days with nurses and doctors, it got me wondering if I did in fact have eyes, the eyes were unnoticed and because the inferior globe of my eyes was not protected if they sank into my head and that's what caused me to go blind.

I've always written that I was born without eyes because that's what I was told, but reading this, that they could have sank into the sockets leads me to wonder if that is in fact what happened and if what I've been told up until now has been inaccurate.

I must confess it's extremely upsetting for me, but I would like to know if this scenario is even possible or plausible.

I suppose my next step is to get back in touch with my mother because Dad says she has the book where the nurses wrote about me while I was under their care. I would love to get in touch with a craniofacial surgeon to see if this is plausible.

Considering how sick I feel at the moment I'm wondering if this won't be more trouble than it's worth, but I do want to know.
Love all,