While at the LPA National Conference in DC, I attended a few workshops, one of which landed on the controversial topic of limb lengthening (ELL). While my post is NOT intended to be medical advice, it is intended to help spark a discussion. As a parent, I do not think ELL is right for our family. Let me repeat- OUR family, as in Dave, Chelley and Addie. Also not right for our family: living in a swamp, being fans of wrestling, tattoos before the age of 18, or book burning.
I can remember my youth… those days I spent counting calories and wondering if the package said “0”, what was in the food I was eating? I decided that I would punish myself no matter what. I think of ELL like liposuction for an average height woman with a beautifully imperfect-perfect body. The first time I came home and told my mom I wanted lipo, she laughed. I threw up lunch the next day. and many days after. I wrapped myself in bandages to try and trap the fat, took diet pill after caffeine pill downed with coffee and energy drinks. I battled disordered eating, diet pills, and the cover of every magazine on the book shelves. Who am I to judge someone who has the courage to go out there and have multiple procedures to change the way they look with reason? Do I disregard concerns that will someday surely haunt Addie? If I ignore her pleas, will that lead her to the sane extremes I went to as a youth?
There are so many things that run through a mother’s head the moment she hears, “it’s a girl.” Pink and bows and sugar and spice… and S#IT! All those moments of insecurity come running back. While laid back on a table with someone rubbing jelly all over your belly you remember all the talk, laughter, pointing and moments that brought you the most insecure moments of your life. Being a girl isn’t easy. In this light, I choose to celebrate more than Addie’s difference, because difference is just a state of relevance in the moment you stand in. Her brilliance, laughter, charm and style: I WILL. As for dwarfism? I will celebrate her physical appearance. I don’t choose to, it’s something innate. The way her curls frame her face, and her smile infects my depressed heart to light. The way her tiny hand makes its way into mine before we wake in the morning. The way her legs curve and dictate her authoritative walk. The protruding tummy she so proudly pats when she is hungry for “yumm”.
I will celebrate her for all that she is. Her fingers wrapped in my hair, those elbow dimples, and the curve in her back- all making her uniquely beautiful. They make her Adelaide.
But this is about the National Conference… so let me start with my insecurity. A woman. There was a woman who walked around with an iPad or Tablet device trying to show pictures of her son. She was even at the workshop that sparked the initial writing of this post. While the workshop wasn’t about ELL, there was a strong overtone at the end, and this woman would not let go. I was uncomfortable when I saw her in the room, and my discomfort was never eased.
I appreciate ALL opinions, but ask me once, ask me twice, ask me three times… you’re out. I felt like I was under attack, even though the woman wasn’t following me, per se.
So… what did the interlude of this workshop teach me? Before I tell you, I want you to know that the panel of this workshop was made up of doctors and their assistants. There was a lifetime of experience before me and I wrote as fast as I could.
With limb lengthening, which I will continue to refer to as ‘ELL’, doctors usually want to begin the process at age 4 or 5. The major issue with this is that age 11 is around the age when you can truly engage a child in a conversation that holds weight and consequence comprehension. One panel member feels that beginning the process at its crucial time (ages 4/5) is malpractice because the child cannot truly assert his or her feelings. I have to agree.
My issue with beginning anything… EVER… is that a child who is bound to ELL has dedicated their mobility to that as well. Swimming, running, swinging, playing with friends in the cul de sac, or late night bonfires on the beach are hard to accomplish if possible at all. Being a kid should not be defined by staying in place or physical therapies… and putting yourself through that for adding inches to your arms and legs (just arms and legs.. feet and hands stay small) doesn’t seem quite as happy as a childhood full of experience!
There are a lot of risks with ELL, too. Things like trapping nerves, paralysis, narcotic addiction, seizures, risk of becoming a quadriplegic… People have died. Yes, died. There is always the possibility of psychological impact, where I hope that the screening before the procedure even begins would alleviate that risk… but changing your whole body, causing deep scars that will be your cross to bear forever, while changing your identity from a Little Person to not-quite-average is certainly an exercise in mental strength. But there are many successes, too! In fact I feel blessed to know a family who has been so open with their experience and has given me a lot of education to other reasons (beyond physical) to participate in ELL. In fact, the young woman who has so generously shared her journey amazes me, for I would not have the strength to do all she has done to achieve such success (inches). The many procedures and “down time” terrify me, however, with surgeries, waiting, therapy and then doing it all again. With this, the feet cannot be changed- so I am concerned with how different one would look with long legs and the feet of a child. After years on the legs, the arms are lengthened, which offers the least amount of complications and pain with most potential for functional benefit. Again, the hands cannot be changed. If you’re small with small hands and feet, how does one feel being less than average height, but taller than an LP with LP hands and feet? I feel torn as to how I would feel, myself, but confident that we are all put on this Earth for a reason and that reason is to be unique. I am heavily tattooed and hope that if Addie wants to make body modifications, she choose ink over years of pain and physical impairment… but at 16 months, Lord knows what she’ll throw at me at 16 years! I know I am equipping myself with the thoughts and knowledge now to answer her questions, and am trying to learn everything before the day she comes to be so that I am not judgmental of her inquiry.
Then… there’s the philosophical discussion. Should ELL even be offered. If so, when? And why? In America, only about 2-3% of LP participate in ELL, while in Italy and Spain, more than half the dwarf-population undergo the long procedure. There are many theories, but one remains poignant…
La bella figura. Beautiful figure. It’s a folk philosophy, a way of life, being beautiful. This idea extends to the thought that what you’re like on the outside reflects your soul. Could this la bella figura be controlling the subliminal belief that a person has a twisted soul because of being a dwarf? Would straightening and lengthening the body make one more aesthetically pleasing and thus have a more beautiful soul?
To answer all the questions we have as individuals and as a society, we need science. Research. A series of longitudinal studies showing us all of these things and more, but there are none. Perhaps the range is just too great, the “condition” too rare, the science too expensive or the genetic difference too irrelevant to society. Whatever the cause, the effect is less information concerning ELL- facts, science. Not theories or My Side and Their Side. Real science by an unbiased group or objective party. That is just not there, and because of that, this piece is written solely on what I heard at the workshop and my own personal feelings as the mother to a 16 month old child with achondroplasia dwarfism.
Lastly, we were left this this thought: Are LP in this country lucky that that we think we should be changing the environment not changing the people?
I don’t think it is luck, I think it is evolution. We are a young country made up of a melting pot of people. While we are not the best, greatest, most monetarily responsible country- we have some attributes that make us the fun-loving, adorable, not so bad to deal with kid sister of the UN. We accept many people. Sure we have a ways to go, but for the most part- watching people go under the knife for looks (plastic surgery), weight loss (lipo/gastric bypass), or limb lengthening is something that strikes us as odd- regardless of the outcome. It’s something many of us joke about… sure we want to look more defined, thinner and taller, but we love ourselves too. Somewhere deep inside… and usually others love us, as well. Accepting our family members, be they big, small, fat, thin, Republican, Democrat or
fence sitters Independents makes us human. American human. It’s not luck, it’s love.
Be what it may to you, we are lucky to have such diversity in our community- that’s for sure. I open this up for FRIENDLY debate and discussion, and ask that the comments remain impersonal and general. This is NOT a place of judgement- NO ONE is wrong in their personal thoughts about limb lengthening. If you want more information, please search for it… there are a lot of happy and healthy people out there (and limb lengthening as a whole is used for a number of differences, not related to dwarfism, with great success). If undergoing ELL is something you are interested in for yourself or someone you care about- please seek treatment from a KNOWN facility.