Thursday, February 7, 2008

Tessa's Surgery

Tessa was born with postaxial polydactyly, an autosomal dominant trait; an inherited anomoly found in all races but more predominant in children of African descent. She was born with seven digits on her left hand - a thumb, four typical fingers, one very small finger, and one tiny digit made of soft tissue only (no bones or muscle). The seventh was clamped and fell off at home when she was one month old. The sixth digit on that hand did not bend very well and she did not seem to have much control or use of it. Her right hand had a thumb, four typical fingers, and an additional finger that looked like a typical pinkie, that she was able to bend and control fairly well. She was born with syndactyly as well on her right foot - an extra digit webbed in with two others. When a neighbor first noticed her fingers (after many months of being neighbors) she was astonished and pointed it out to her husband. His reply was, "oh, cool, just like my mom" which shocked his wife as he had forgotten to mention for the last decade or so that this was a family trait! Since his mom's extras had been removed, her daughter-in-law never knew she had been born with polydactyly. Most people born with poyldactyly have had the extra digits removed at birth, which is why it seems so uncommon; we rarely (if ever) see someone with more than the usual twenty. It occurs about once in every 100 African American female births. More common in males, less common in Caucasians. Asians with this gene typically have an extra thumb, whereas Africans have post-axial, or outside, little fingers. Interesting, huh?

Well, we consulted with orthopedic doctors right from the start and the general assumption was that she should have them removed. I didn't oppose the idea, but they recommended waiting until she was a little older for the surgery. By the time we moved, found new doctors, and needed to make a decision Tessa was about 18 months old. Her hands were strong and coordinated, people rarely noticed her extras and they were just beautiful little toddler hands. Now the decision to remove those adorable fingers seemed so much harder. There was the possibility that she could be teased, but there also was the possibility that she would be considered unique. One hand seemed fully functional while the other had a pinkie that did not really function. The surgery could go as planned or there could be an error or an unexpected problem and she could lose the use of her whole hand. Not to mention the risk of general anesthesia. There were cons for every pro I could think of. The deciding factor was when they did full X-rays and found that the extra digits didn't have growth plates. In children, a growth plate is located at each end of a long bone, eventually forming into bone itself. It determines the future size and shape of the bones. Without growth plates, it was likely that the extra digits would not grow as the other fingers did and would become more and more different and probably less functional by the time she was an adolescent. We decided to proceed with the surgery. Marked for accuracy. Not a big confidence booster. The x-rays showed her 6th fingers were connected all the way to her wrist. Very unusual to have polydactyly that well formed. In utero, our hands and feet start out like paddles, and as we grow the digits seperate. People with polydactyly just keep growing and splitting, or with syndactyly (webbing) they don't split.
They found on the x-rays that her extra toe was actually the one in the middle of these three webbed toes. It didn't connect all the way to her foot like the others. They decided to just remove the outside toe anyway (what was number 5, rather than number 6) because it was easier and they weren't going to undo the webbing. Apparently that is a much more complicated surgery than the removal.

Waiting for the doctors.

We had taken some comfort things for her, one of which was a stuffed lambie that she liked at the time. They let her take it in to the operating room with her, and when we came out the nurse had wrapped the lamb's three limbs in similar fashion to Tessa's. We had to wait in the post-op room until she could keep some sips of water down and be somewhat awake and coherent. Total time in and out was just a few hours.





She was feeling pretty crummy, groggy and clingy after the surgery but it didn't last long. By the next day she was learning how to use her new oven mitts to do all of her usual activities. I had asked the doctor to leave her thumbs exposed from the bandages so she wouldn't get too frustrated, but I'm not sure that was even necessary. The oven mitts didn't even slow her down!





Ta-da! Checking out the results after the bandages came off. She was intrigued by the stitches but never seemed to notice a difference in her hands. Thankfully, she still had complete use of her hands, full strength and highly developed fine motor skills.