SHOCK!

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
Link:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2825067/

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,
Goodnight.

What Is a Tessier Cleft?

I was born with a Tessier Cleft. It is also/otherwise known as a Craniofacial Cleft.
Craniofacial indicative of both the skull *cranium* and face, facial.

Let's break this down even further.

What is a cleft?

"A cleft is a gap in the soft tissue, bone, or both." *Patricia Bacon Smith, Mother to a child with Cleft and author of Tessier Cleft Info (Page 1)*

So, a Tessier Cleft is a cleft "that involves the mouth, cheeks, eyes, ears and forehead and continues into the hairline." *Patricia Bacon Smith, Mother to a child with Cleft and author of Tessier Cleft Info (Page 1)*

Now, in lay terms, I always describe mine as an open-faced baked potato without the 'good stuff', such as bacon, chives, cheese and sour cream. *See my About Me Page:*

When you hear cleft you may think of a cleft lip or palate. These clefts are very common. In fact, stats from the CDC show that 1 in every 600 births in the USA results in a baby with cleft lip or palate. This number increases when discussing families of Hispanic, Asian and Native American origins.

These clefts are also known as orofacial clefts *Relating to the mouth and face*, and are the most common birth anomalies in the United States.

Funny then, that we don't hear more about them, or see public service announcements. . .
Before we go any further down this path of discussion, it is only fair that I say this.

There is NOTHING a woman can do to prevent a cleft. Let me repeat this, there is NOTHING a woman can do to prevent her child from having a cleft.

Whether it's a cleft lip or palate, or a severe cleft like mine, which is very rare *between 10-20 people in the world have it*. These stats are based on stats I received from my doctor. Oddly enough though, he didn't tell me I had a Tessier Cleft even. He simply said it was a "Craniofacial Cleft". It took me going to Cleft Advocate and reading about a couple other families stories to find out for myself.

I feel it's very important to establish this fact, simply because so many women have either felt guilty beyond words and/or been asked by other people if they took drugs, drank or smoked. Being born with a Cleft of any kind is like anything else. Some mothers never drank, smoked or did drugs a day in their lives/during their pregnancies and had a baby with a cleft. Other mothers smoked, drank and did drugs and their babies came out healthy.

In my next post I'll get into the nitty gritty emotions, something I'm much more famous for as opposed to research. I can, will and do do research, but it is by no means my forte.

Please stay tuned!

Michelle

References:
Tessier Cleft Info:
http://www.cleftline.org/docs/tessierinfo.pdf
Cleft Advocate A Program of Ameriface
http://www.cleftadvocate.com/
Definition of Orofacial from the Free Online Medical Dictionary:
http://medical-dictionary.thefreedictionary.com/orofacial