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Marguerite's Story
My name is Marguerite. I am 42 years old. I live in Colorado. I have a repaired cleft lip (in my day they called it a "hare lip", I'm glad they changed the name...) and also a large unilateral cleft (left side.) I had most of my surgeries done in Rochester NY, although initial lip closure was done in Elmyira NY, and the last surgery was done in Denver Colo, 8 years ago. There have been over 20 surgeries to nose structure and lip (lots of dermabrasion). But until 8 years ago there was no attempt at closing the cleft palate itself. This surgery was done with 2 mucous flaps, I don't know the more technical term. It was not successful. ( Although it did leave some extra tissue that now can be worked with. All miracles are greatly appreceiated!) All these all were done by plastic surgeons. My Rochester surgeon was fantastic for his day. But these days there seems to be a greater team approach. The doctor who will be doing my surgery is an oral surgeon. His approach is different in that he bone graft donor site is inner table of the hip. This is pulverized and sandwiched between 2 layers of mucous membrane. There can be a 40 % resorbption rate of bone tissue so they overstuff it, hoping that they can compensate. After the failure of my previous surgery 8 years ago, my surgeon said the next option was microvascular surgery. This very invasive surgery requires a portion taken from the fibula bone with musculature and blood vessles attached. This is then attached to the cleft site and blood vessels are attached back to the carotid artery. This should provide ample blood supply. But my oral surgeon said that the technique of bone graft as described has been used for 20 years with great success! And yet I had never heard of it. I have worked with a great compassionate dentist, who has really helped me to deal with the cleft in a unique way of closing the palate with a soft material that totally closes my cleft. No mashed potatoes up my nose! Let alone very clear speech. And although I had a hard acrylic obturator that was clipped to a doldar bar it did not close the fistula well. I have so many undercuts in that area. I was thrilled to hear of a cleft palate web site! SO off I trotted to the library to get on the web. We have e-mail at home... I am intersted in talking to any one, especially someone who is my age with a cleft, who might have had a bone graft done. The procedures are so different these days. I am thankful for the children that so much more can be done!
I am married to a wonderful husband, who is a packaging engineer. We have 2 great kids. A son 17 and a daughter 15. After I had 2 children without cleft involvement, my plastic surgeon told me I'd beaten the odds and better quit at 2. But who better could know the heart aches and pains of a child with like challenges....
Well that's an eye full! Glad to be a part of you. Marguerite