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40 T/D/Y #2: Cleft Palate

I was born with a bilateral cleft lip and palate. In short, the roof to my mouth never fused close during my development, and was open to the nasal cavity above. Bilateral means the split extended through my upper lip evenly under both nostrils. This as you might imagine is something of a problem, but it’s actually fairly common—about one in 700 births worldwide—and readily treatable through surgery.

And treated through surgery it was. One of the reasons I know and love Boston so well is from regular repeated trips there, as my treatment was handled by the Boston Floating Hospital, part of Tufts New England Medical Center. (Oh, apparently those names are outdated, it’s now the Floating Hospital for Children at Tufts Medical Center.) I would go down regularly for checkups with the doctors and also have normal dental checkups there as well. I would always ask my parents what they were going to do that visit, and my dad would always say they were going to pull out all my teeth. Somehow I managed not to be traumatized, and rather to love visiting Boston.

My visits were always on Mondays, as that was my dad’s usual day off, and he always brought me; most of the time Mom was either staying home watching my younger sister, or in later years was at work. Sometimes after the checkup we’d go downstairs to the cafeteria in the basement and get doughnuts, coffee for Dad and chocolate milk for me. Other times we’d take a walk through Chinatown and the Combat Zone to Faneuil Hall Marketplace and get lunch, usually at Swensen’s. It’s funny that I spent all this time regularly with my dad but don’t recall talking with him that much; he was generally pretty gruff, but obviously cared for me a lot.

I know I had several operations before kindergarden, and I can remember at least three after that, during kindergarden, first grade, and my last one at the end of fifth grade; I’m pretty sure there was another one during second or third grade too, but I forget exactly. I remember hating to get shots, and one time throwing enough of a fit that they had to have a couple orderlies hold me down on a stretcher so the nurse could give me the shot I needed before the operation. I remember talking one night with a girl who was in one of the other beds in the room, climbing out of bed to go over to her side of the room because I couldn’t hear her well, and getting caught by a nurse and ordered back to bed. I remember waiting days during one stay for the chance to get up to the playroom, and finally being allowed up there only to have my parents show up shortly after to take me home. I remember waking up in the recovery room and having to pee in a container, and not really thinking or caring it was right in front of the female nurse. I remember talking to another kid in fifth grade, a boy who said he wanted to be a gigolo when he grew up, and riding around in wheelchairs. And I remember waking up on the operating table once: specifically, suddenly being aware of myself lying on my back, looking up into a bright light, and seeing a doctor looming over me and lowering the anesthetic mask down over my face.

When I had my operation in fifth grade, I had the understanding that that would be the last one. It was mainly cosmetic surgery, too; my upper lip had always had a puffed-out appearance due to the early repair work, and that operation was to reshape it to look more natural. As I recall, for some reason they also built up my nose to be larger at that time, and I’ve never understood why; I do remember them telling me I could have another operation when I was older, if I wanted my nose re-shaped again, and at the time thinking there wasn’t any reason why I’d want that. As an adult, I think my nose is rather crooked and a bit large, and it might be nice to have it a bit straighter and smaller, but it doesn’t matter enough for me to bother changing it.

However, it turned out that that was not my last operation for cleft palate repair, after all. During my teens I had a couple upper front teeth pulled, so there’d be room for the rest, and ever since then I’ve had gaps on either side of my frontmost two teeth. The gaps were filled by false teeth on my retainer, and matters stayed that way for years. In the year before I moved to Seattle, I finally started considering getting permanent false teeth, and after moving I made a point of discussing that with my new dentist. That led to consultations with an oral surgeon, which led to the revelation that although the hole in the roof of my mouth had been repaired when I was a child, they had never actually done a bone graft to fill in the missing bone, and I would need that bone not only to anchor the false teeth but also to avoid eventually losing my two frontmost teeth. So I have since had yet another brief hospital stay for further cleft palate repair work—the initial bone graft—as well as a second outpatient operation to fill in some more. And the work still isn’t finished, as I haven’t yet been able to afford to actually get the posts for the false teeth implanted.

I’d like to think that some time soon, even within the coming year, that I can get that done and finally be able to consider the repair work complete. However, much of my life has been shaped by the fact of being born with a cleft palate, and I will always be marked by it. More on that in a later post.


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