Friday, March 14, 2008

Limb Difference

This is the term that we use to describe someone whose arms or legs do not match. There are many reasons that someone could have a limb difference. And there are four limbs that can be affected. Sometimes more than one limb will be missing or short. Sometimes all limbs will be gone. Sometimes the limb is present but not in the same way it should be, like Madeleine, she has a leg, she had a foot, but the discrepancies in length made it non-functional in the typical way. There are reasons that babies are born without their limbs or with a difference in limbs. Sometimes people lose limbs for a variety of reasons including accidents, cancer, or meningitis.

I know that I am sounding like an elementary school teacher (which, I am, after all), but I think explanations are important. I still see people stare and wonder about Madeleine's leg. I still see people get ooked out by seeing someone without an arm. So, let's just get it out there, shall we?

Everyone remembers the problem with Thalidomide. A tragic era for many parents and their babies. For the record, Thalidomide did not cause Madeleine's fibula to stop growing. The birth defects associated with Thalidomide are different than what Madeleine was born with. These babies were born with short, fin-like limbs.

Another type of limb difference is Amniotic Banding Syndrome. According to the Amniotic Banding Website it is:
"Amniotic Band Syndrome (ABS) also called Amniotic Constriction Band Syndrome is a set of congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero."

or in other words:
"Before the baby was born the body part(s) that was affected by ABS (arm, fingers, toes, etc.,) was caught up and entangled in string-like bands. This caused abnormalities that were present at birth"

Or, there can simply be a blood clot. When the limb buds were forming there was a blood clot and that limb didn't grow. This was the case with Madeleine's leg.


Okay, so I've been working on this post forever. I need to put it out there. The point is that shit happens. People are not born perfect. I know a set of identical twins and one twin got leukemia. The other didn't. I know babies with cancer. I know adults with cholesterol issues even though they are not fat. I know that I have a hormonal imbalance even though I didn't do anything to cause it (supposedly).

My daughter was born with a 'deformity'. She will never look like you and me in the leg department. She will always be an amputee (among other things, of course!). Does this matter? Um, no, not really. Did I ever think I would say that? Um, never.

If I knew then what I know now I would know that this isn't really that big of a deal. I hate admitting that, by the way. Because I see your stares. I hear the comments that kids make. I've seen kids shy away from Madeleine's leg. She didn't notice but one day she will.

A baby will be born without his hand. His parents are devastated. They curse God and wonder what they did wrong. They fear they had something to do with it (they didn't). They cannot imagine their little boy's life growing up without a hand. It is so so sad. He will face challenges that you and I will never know. Most of them socially.

But.... He will be precious. He will come into this world with grace and style. He will be beautiful and brilliant and have so much to offer. His parents will never want to know what life would be like if he hadn't been born. He is a blessing to his family and to the rest of the world.

I know this because I live it.

Expect to meet people with limb differences. Don't be surprised. Admire what they can do.

1 comment:

BethGo said...

My boy was born without a hand and he is one of the many joys of my life. I feel blessed every day that he is here with us. People can stare all they want. My boy is fabulous with or without a hand.

Your girl is fabulous too and don't let anybody tell you different.

I'm adding you to my links. :)