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This one is about: Crouzon Syndrome
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One Family's experience:
I am the mother of a baby girl with the Crouzon's baby. Actually she will be 1 year old on May 14th. Her name is Brenna but I call her the "Plum" (short for Sugar Plum - she is soooo sweet!!). When I explain Crouzon's to other people I tell them it sounds like "Crouton" and people remember it. Kind of silly but it works.
Crouzon is a genetic syndrome which affects the bones in the face. It is caused by a random mutation of a 'fibroblast growth factor receptor' sometime during gestation. Once a person has it, it can be passed on to future children (50%). Brenna's was a random mutation. We had no idea until she was born that anything was wrong. It took 3 weeks for a geneticist to diagnose it.
The syndrome can vary from person to person but usually all of the bones in the face are affected in some degree. Sometimes other parts of the body are affected also. Apert's syndrome is real similar with the hands and the feet fused in the bones. The most serious aspect is that some of the skull bones are fused and need to be opened/restructured to allow the brain to develop normally. I am still learning lots but there are usually at least 3 major surgeries throughout the child's life. I am discovering there are probably going to be more than that but I can't pin a MD down to an average number. One MD said one of his patients had 17 surgeries by the age of 17. Another one had 17 surgeries by the age of 13. These are some of the questions/concerns I have. The remainder of the surgeries repair previous surgeries that were not quite successful, like my daughters. They also advance and correct the bones of the face and jaw which are usually too small.
Common problems are breathing, eating, hearing, and eyesight difficulties. We use Mead-Johnson squeezy bottles with success because her palate is too high to get adequate suction and her nose was very obstructed. I am having troubles getting my daughter to eat chunky solids, for instance, because of a small trachea. She keeps choking and is refusing to eat. There is a homepage called Teeters page for Apert's syndrome if you are interested.
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