Wednesday, August 3, 2016

Tucker's Hands: Complex Complete Syndactyly

Hi Y'all!

As I mentioned in his birth story post, Tucker was born with a condition called syndactyly.  There are several different types of syndactyly and because we have not yet met with the specialist, we don't yet know which type he will fall under **Update, he was officially diagnosed with Complex Complete Syndactyly**.  His index fingers were also affected and are both short with one bent inwards.





I was born with my left index finger short (missing a joint) and my right bends inwards (has both joints) and both of my pinky fingers are also short and bent inwards (they have both joints as well).  I was officially diagnosed with Bell's Brachydactyly A2 at 18 months.  I had an elective corrective surgery on my right index finger when I was about 12 or so, hence the scar.  I had the surgery to try to make it less bent and fit better against the knuckle of my middle finger (like the left one).  I'm not completely pleased with the outcome but it hasn't bothered me enough to have it worked on again.  My pinkies are too small to operate on.


Pardon my horrible lack of manicure!  I've got a newborn ok! 




We don't know yet if his pinky fingers are affected at all and probably won't until the doctors either x-ray or during his separation surgery.

We have an appointment with Dr. Chang at CHOP (The Children's Hospital of Philadelphia) in September.  The pediatrician referred us to a local hand clinic but we decided we would rather take him to a pediatric specialist.  CHOP is one of the top children's hospitals in the country and Dr. Chang came highly recommended so we decided that is where we wanted to start.  We are also lucky enough to have family an hour outside the city who have offered us a place to stay (and babysitting for Jordyn).  Its about a 6 hour drive for us so we are planning on staying for a short visit before the appointment.

I think being born with a similar condition has made this whole process much easier for both of us.  We both had a feeling in the later part of my pregnancy (although we neither one really voiced it until after he was born) that something was wrong so once we saw his hands, we were neither one really surprised.  That being said, with the exception of my fingers, we don't know of any family history of either condition.  It was quite a shock when I was born with my fingers like that so my parents did a genetic study and the best that the doctors could tell was that I was neither missing or had any extra chromosomes.  We would like to do some genetic testing with Tucker in the future but for right now our main concern is getting his fingers separated as soon as possible so that he can begin to learn to use them independently.

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