Growing up With Symbrachydactyly: Short Fingers or Nubs and a Normal Thumb
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Born With Short Fingers
The moment when your first child is born is a life-altering moment in any parent's life. When I was born, in the mid-1950s, there was no ultrasound test. So, the first thing people wanted to know about a new baby was: is it a boy or a girl?
Once the sex was determined, they checked to see that everything was in place. With all limbs accounted for, it was time to move on the fingers and toes count. I did not pass this test. I still wince a little when I hear people say of their perfect new baby, "he has all of his fingers and toes."
They Are Only Fingers
It was just a little thing; I actually have all of my toes. It's just that the four fingers on my right hand are short—ending just about where the first knuckle would be, the thumb is perfectly normal.
As physical handicaps go, it's not much to complain about. However, it was alarming for my parents at the time. They took me to many doctors and specialists in the first couple of years of my life.
At that time, the only thing the specialist told them was that it was a congenital amputation. The only treatment he could offer was a surgery that was just cosmetic.
They could lengthen the fingers so they would appear more normal, but surgery would damage the nerves, making my hand less useful than it already was. Being loving and intelligent parents, they chose to leave it alone.
My hand actually works fine, I can perform most normal tasks, and I type 50 wpm, a perfectly adequate speed.
Dealing With Other People is the Worst Part
The greatest impact my short fingers had on my life was social. Before I started school, I was not self-conscious about it at all. I would even tell people, "I have a tiny hand."
Once I started school though, I found that kids would stare, and many of them avoided me as though it were contagious. They would get used to it after a while, and the reactions became less pronounced.
Each fall when school started again I would have to repeat the process. I think all of this made me more of an introvert than I otherwise would have been, and I began to hide my hand in my pocket when meeting new people.
What Is Symbrachydactyly?
In my life, I have never met anybody else that had this condition. I have never consulted a doctor about it; after all, it is what it is.
Physicians I have gone to for other reasons have been more curious than anything, but they have not had much information to offer me. It is only because of the Internet that I have learned anything more about it at all.
My own self-diagnosis is that I have symbrachydactyly, a congenital hand malformation that occurs in 1 in 32,000 births. In most cases, only one hand is affected.
The cause is unknown, but scientists think that it may be due to an interruption in blood flow to the fingers of the fetus during the first weeks of pregnancy. That is when the paddle-like structures on the arms of the fetus are dividing into fingers. There is no known way that the mother can cause her child to have symbrachydactyly, and no way she can prevent it.
Symbrachydactyly is not genetic, so it does not run in families. I know that no one else in my family has it. I have three children, all with normal hands.
It seems that my case is mild, as I do have usable fingers. In some cases, there are no fingers at all. Sometimes there are tiny nubs where the fingers would have been. Sometimes, the fingers are conjoined or have webbing between them. I did not have that. Some babies with symbrachydactyly are born with part of their arm missing, and they may have tiny fingers or nubs on the end of the arm.
What About Surgery?
Surgery has advanced since I was a baby; children born with symbrachydactyly are often treated with surgery. If they have short fingers, the fingers can be stretched. Sometimes a toe will be transplanted to the hand to provide a finger for the thumb to pinch with.
I have mixed feeling about surgical treatment. My gut feeling is that, if possible, something permanent like surgery should be postponed, at least until you can see how the child functions with the hand he has.
I have heard a few horror stories from people who had surgery as kids. There can be complications. Dislocated joints in the fabricated digits can cause lifelong pain, repeated follow-up surgery, and arthritis. Also there can be pain in feet that bones have been harvested from. Perfectly good feet, destroyed to make hands that are less useful than they would have been if left alone.
I am sure it is a very difficult situation for any parent to be faced with, but once surgery is done the hand can never be put back the way it was, and toes are important too.
In addition, I would strongly discourage the removal of finger nubs. I think many people choose to do it because they are uncomfortable with how the nubs look. That is not a good reason to have surgery performed on your baby. Doctors and parents often say they are concerned that the nubs will get caught on things. I am afraid that reason could be used as an excuse.
Take your time and ask your physician what the disadvantage would be if you waited, do not rush into surgery. Ask for information about how previous patients are doing, and if they are followed throughout life. Do they require multiple surgeries? Do their hands cause them pain?
I am not at all saying that no child with symbrachydactyly should ever have surgery. I just think that parents may feel like there's something wrong with their baby and they need to "fix it" right away. Don't rush into something that can't be undone.
The child's hand will never be completely "normal." The options should be carefully weighed since the child cannot speak for himself, and he's the one who will have to live with the result.
Even if nothing is done, just like other people with limb differences, your child will adjust to whatever he has. Symbrachydactyly is not physically painful for the child. There's no reason a kid with symbracydactyly cannot do anything he wants to do, and have a perfectly normal and happy life.