Obviously, the title of this post is meant to be sarcastic…in some ways.
Dan Kennedy, is a writer for the Guardian and father to Becky, a 16 year old girl with Achondroplasia.
Dan recently wrote an article in response to an article published by the Washington Post about a young girl named Caitlin Schroeder, another little girl with Achondroplasia who underwent the controversial extended limb-lengthening (ELL) surgery.
I say controversial because, quite a few years ago, Little People of America, put out it’s official position statement regarding ELL. In a few words, LPA’s position is that no short stature person should undergo ELL, unless it is to correct a medical deformity that is affecting their health. So, if Knoah were to undergo a surgery to correct his bowed legs, because it is affecting his posture and a side effect of that is he gains 1-2 inches, so be it. However, if Knoah were to undergo ELL because he wanted to be taller, than, no, the surgery should not be done. ELL at that point would be considered cosmetic and nothing more.
The average cost of ELL hovers around $200,000.00 to 300,000.00. Most insurance companies will not cover the cost of the procedure because it is deemed “not medically necessary”. ELL requires bones to be broken, set with metal rods and pins that have to be turned every few hours. The end result is achieving a height 4-12 inches taller than when you began.
Dan addresses some very critical points about ELL and the perception society maintains about people with dwarfism.
We are under no illusions about the challenges Becky faces. She’s four-foot-one, and, at 16-years-old, is about as tall as she’s going to get. Her arms are disproportionately short. She waddles. But though her genome is imperfect, she, Becky, is perfect just the way she is.
Any parent of a child with dwarfism who says “I don’t see their difference”, IMO is fooling themselves. I know I have said it, but what I don’t say is I am very aware of his short stature. Yes, I see just Knoah. Meaning, I see my son, who is rambucious, loud, demanding and yes, short. When going clothing shopping, I tend to prefer used clothing over new. It is easier for me to go to a yard sale, buy 6-9 month jeans and 18-24 months tops. I can’t do that at a retail outlet. If I did, I’d have to buy two different sizes to complete one outfit that fits. Even that, is suggesting when I get them home, they will fit without alterations.
Society sees a person with dwarfism and sees their “IMPerfections“. We all see the imperfections, but those of us who have a short statured person in our lives, know that their perfect they way they are.
Dan also, takes the theme of this blog (wishful thinking ;)) a step further and asks:
As impressive as the Post’s story is, what’s missing is the sense of dwarfism as another type of normal. Maybe we’re not there as a culture - yet. But we’re moving in that direction. Little by little, you might say.
Exactly. Why can’t dwarfism be another type of normal? It is in our lives, as I am sure it is with other families. Having Knoah as a part of our family is normal. His stature is normal. He is normal. It doesn’t matter what someone else thinks about him or his height. It doesn’t change the fact that I hope he as with our AH children, grows up to be a decent, productive member of society. What is Normal for you, isn’t normal for me.
The Post’s article, as well written as it is, it was 5 whole webpages, doesn’t address there are many more people with dwarfism who are happy with the way they are. It doesn’t talk about the risks associated with ELL. It doesn’t mention that while yes, you can change your outer appearance, you still have Achondroplasia or your form of dwarfism.
Having ELL doesn’t eliminate that, it just makes you taller. Dwarfism is not like a cancer that needs to be cured. Once a cancer patient undergoes radiation, the end result is hopefully, they’ll be cancer free. A cancer survivor. People with dwarfism who undergo ELL do not get the luxury of saying their dwarfism free. A dwarfism survivor.
Huge difference! Cancer is a disease that takes many, many lives each year and while many forms of dwarfism does also, dwarfism is not a disease that needs to be cured. Many aspects of dwarfism cause medical complications that require medical interventions, it does not rid a person of it, it just lessens the affect.
As Knoah gets older, we will at some point sit him down and have the Birds and the Bees talk, but before that happens, we will have to have the “dwarfism talk”. Basically, the conversation is going to go like this:
Knoah: Mom, why are all my friend’s taller than me? Am I still a baby, because some of the kid’s call me a baby and I am not a baby, I don’t wear diapers.”
Mom and Dad: Knoah, you have a genetic condition called Achondroplasia. This means your bones don’t grow as fast as the other kids.
Knoah: “Well, I don’t want to be little!” Followed by crying…”I want to be like everyone else!”
Mom and Dad: “Knoah, you are like everyone else! Your body is short. That is the way you were born and mommy and daddy don’t want you to be any other way but like you.”
Then in a few years, we will talk to him about ELL. We will explain the benefits and complications that can occur. If, he asks, we will even travel to doctor’s who preform the surgery and try to meet up with people who has had the procedure done.
Unlike, shunting for Hydrocephalus, ELL has a limited window of opportunity. Most children with dwarfism who start ELL are the age of 12. Some children can complete the procedure in a matter of months, other’s take a year or more, depending on how fast the bone grows.
For me, I hope that at the end of this conversation with Knoah, he is comfortable enough with who he is to not want to have the surgery…not to mention we couldn’t afford it anyway, but if, and that’s a big if, if, he wanted to have the procedure, we would find a way.
Having a child with dwarfism, in many ways is not easy. This world was not built for them. You can though help them adapt to the world and make it work for them. We have to be creative and find solutions to help them “fit” in.
Then again, aren’t we all just trying to fit in?
