Thursday, February 28, 2013

FAQ's Regarding Zeke's Hands

From strangers, acquaintances, and friends, we do occasionally get questions about Zeke's hands.  For those of you too shy or polite to ask, here are some of the more common questions and the answers.

1.  Why are his hands like that?  (Mostly asked by elementary aged children.)
Zeke was born with his hands that way.  It is not from an accident and it doesn't hurt.  We still do not have an official diagnosis other than congenital birth defect but I'm still holding onto my belief that the technical term is symbrachydactyly .  It is not something that is inherited nor can he pass it on to his children and there are a lot of unknowns regarding why it actually happens.

2.  What kinds of things can he do with his hands?  (Usually this question actually comes out more like "How does he eat? or another similar question.)
Honestly, this kid does whatever he wants.  He came to us knowing how to use silverware, chopsticks, and writing utensils.  (I am sad to say we have not used chopsticks very much and when I gave him some the other day, he struggled.)  He can drink from an open cup, catch a ball, open our patio door and put together simple wooden puzzles.  We took a break from being potty trained when he first came home but after Christmas, went back to underwear.  With that development, he decided he wanted to dress and undress himself.  So he can take off all of his clothes by himself and can put on underwear, pants, socks, and shirts.  (Pretty much by himself, depending on the piece of clothing.)  He can unzip zippers as well as any other two year old.  Two things that are impossible right now for him are pants with zippers and opening doors.  Pants with zippers have an open front and so he can't pull them up like he can pants with all over elastic waists.  Door knobs require the ability to grip and turn which he can't do.  When he is taller, he will be able to use both hands to do that but right now he is too short.  The reality is he is very adaptive and innovative.  He just figures out a way on his own.  Right now, some of his favorite words are "Do it!" which of course really means "I do it!"

3.  Will he use a prosthetic?
Generally speaking, most people whose upper limbs are affected by limb differences do not choose to use prosthetics.  Many people feel it is cumbersome and that they would rather just make do with what they have rather than add something else into the mix.  For those with lower limb differences, prosthetics are more commonly used.  There are assistive devices that he may or may not choose to use.  For example, he might choose to have something added to the handlebars of his bike since one arm is shorter than the other.  There are people who spend their careers designing special equipment that enables people with unique bodies to be able to do things like play the violin, ride bikes, drive cars, etc. and there is a chance that at some point, one or more devices like that might be helpful to him.

4.   Can they do anything to fix his hands?
"Fix" is a relative term.  His hands are always going to be unique.  However, they may or may not be able to give him more function.  We will be visiting Shriner's Hospital in Minneapolis in May to meet with a hand specialist.  After an initial consultation with an orthopedic specialist at our local children's hospital, we were referred to Shriners.  The specialist we did see thought there might be the possibility that they could create a pincher type grasp on his hand that is missing the fingers.  That hand is actually a wrist with a portion of his palm so there is more to work with than what you might assume.  However, we have no idea of the pros and cons of doing a surgery to create a pincher grasp.  We will just wait until our appointment in May and go from there.

Last, I thought I'd share a picture of his hands.  Kids especially are really curious about what how his hands look..  Grown ups are usually too nice to let on that they are curious.

His left hand has a full thumb and a portion of the pointer finger.  The middle finger on that hand is more of a nubbin but does have some bone in it.  He also has 2 small nubbins that don't appear to have any bone in them.  His right hand has a functional wrist and portion of a palm.  At the end of the palm portion are more boneless nubbins.  He actually does have the "start" of 5 individual fingers on that hand if you look closely.  One thought has been that they might be able to deepen the space between his thumb and the other "fingers" on this hand and create more of a functional thumb on this hand.


Dardi said...

Our daughter's left hand also has the beginning of all 5 fingers. Our doc has suggested he'd like to do the same thing...deepen the spaces in the hope of helping her be able to grip things. He said the goal is to make it the best "helper hand" it can be (her right hand is fully developed). They have said hers is due to amniotic banding. It really is amazing how much I don't even think about it anymore (so much so that when I was filling out paperwork for her IEP, I forgot to list it under disabilities!)

redruby said...

Thanks for sharing! Kids are very adaptable and learn quickly. I bet it won't slow him down at all :) Keep me posted; as a therapist, I have a double interest.