Back to Curtis

Last week we took our daughter back to see Dr. Thomas Graham at Curtis National Hand Center. This was our first real appointment at Curtis. Our first visit was during the monthly clinic the Center offers for those seeking initial consultations for children with congenital hand differences.

As I previously detailed, our daughter has a small thumb and a pinky finger on her right hand. She is missing her index, middle and ring finger. The growth of the hand so far has allowed her to form a very functional pincher grip.

Overall the discussion was as positive as we could've hoped for. Dr. Graham was as optimistic about our daughter's hand function as he and the others physicians were during her initial clinic visit. It was Dr. Graham who first diagnosed her condition as "transverse failure to form." Meaning it is not connected to any other conditions and is very unlikely to have been passed on genetically. In his words, it was a "lighting strike."

The bottom-line from this appointment is that there is really nothing more to do in the short-term other than continue watching our daughter develop. We are seeing one more specialist at Shriners later this month. Provided his guidance doesn't dramatically differ from the 1/2 dozen others doctors we've seen, my wife and I have agreed that we've heard enough to be confident that our daughter is lucky to have the level of function she has and that there are no procedures we need to plan for in the near future.

Curtis National Hand Center

The Curtis National Hand Center runs a free monthly clinic where a team from the center provides a joint consultation for families with children that have congenital hand differences. We were lucky enough to get into the clinic that was just held in November. They see about 5 to 6 cases per clinic.

The clinic itself appeared well organized. Registration was straight-forward when we got to the hospital and our appointment started exactly on time.

We started with with one of the physicians training at the center. He gathered some basic information and took x-rays of our daughter's hand. It only took about 15 minutes total. We then waited for about 10 more minutes before being called into a conference room where we met a group of six physicians. The two lead doctors were Dr. Thomas J. Graham and Dr. Michael S. Murphy. The others were fellows who observed but didn't comment. Both Graham and Murphy spent a few minutes looking and playing with our daughter's hand. Dr. Graham took the lead and gave us his initial prognosis. In summary they were very optimistic about the function they believed our daughter would have with her hand. They explained in layman's terms that you basically make two kinds of grips with your hand -- a hammer grip and a coke can grip. They said that our daughter could form a coke can grip. Dr. Graham called the condition "transverse failure of formation" and that it was definitely not Amniotic Band Syndrome. While they encouraged us to see a geneticist, they stressed that often with cases like these there's not a genetic or environmental explanation. It just happens for some unknown reason. They answered a few more of our questions and then Dr. Graham asked us to schedule an appointment with him within the next 3 to 4 months and at that point he could observe whether the hand was growing consistently and we could discuss what if any surgical procedures may be necessary in order to ensure our daughter maintains the function she has.

Meeting with real experts about our daughter's condition had a significantly positive affect on our overall comfort level with her situation. The combination of their obvious expertise and the relaxing environment of the consultation provided more than a little relief for us. Knowing now that our daughter will be in the care of a great team even if she ends up requring very little actual treatment for her hand has given us sure footing for the first time since she was born.