Some Call it Luck *Trigger*

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.

Thank you for reading.

12 Comments

Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

12 Responses to Some Call it Luck *Trigger*

  1. PIHM

    I think exactly the opposite of what you think :-). I however 100% agree with you that it is a decision for each individual and I accept your respectful invitation for a discussion.

    If the debate is to turn nasty, as it always does on POLP, I will drop out, because it’s really not worth fighting over it. We are parents, all in teh same camp, all wanting the best for our kid, although we may choose a complitely different direction. Even Dr Pauli says that this is like talking about religion with someone else.

    You can read some of my thoughts here:
    http://ourtinyhypo.blogspot.ie/2013/05/what-i-think-of-limb-lengthening-preface.html

    Part 2 here: http://ourtinyhypo.blogspot.ie/2013/05/what-i-think-of-limb-lengthening-part-2.html

    A few additional thoughts about your post:

    – I don’t think any reputable medical professional would do the procedures at 4/5, it’s more like 8-10. hat would be a huge warning sign to me.

    – With the new internal devices, the scars, pain, etc. are significantly reduced. There is one scar less than an inch long on all limb segments.

    – For anyone considering the procedure it is an absolute must to go to a doctor who has done hundreds if not thousands of this procedure for dwarfism patients. Because with mismanagement, you are right, the complications can be very severe.

    • martinkadelux

      Yes! This is politics and religion, and while not my choice if an argument starts here I will moderate heavily. Peaceful discussion only :-) THANK YOU SO MUCH FOR THE LINKS!

  2. I’ve read your very provocative post 3 times. Humanity has always been wrapped up in “beauty” and “perfection”… the concept of these being so different in so many different cultures. Beauty is often wrapped up in spirituality… the beautiful “soul”, as you touch upon so eloquently. Does beauty dictate society? Does society dictate beauty and perfection? The question of the universe. Scientists, medical professionals, researchers have found myriad ways to make us more perfect – from our teeth to our toes, from our tummies to our torsos, from our hair to our hearts. But “perfect” in what sense? I can’t answer this. I honestly feel that if procedures are available and well-developed and as safe as possible and time, thought and risks have been very thoroughly researched, it’s an individual’s right to proceed… or a Mom/Dad’s right to seek. The ELL question is obviously one that needs lots of advice. I don’t know what I’d do, Chelley. I’m not a procedure person myself and I guess I look to the soul more than the most, but you’ve raised my awareness of ELL… and I thank you for this. I’m looking to see comments (like above) that give me further insight into this discussion. Beautifully, thoroughly presented…
    Sharon – MomGenerations.com recently posted…A Brimfield Antigue Show vintage “find” – The Red DressMy Profile

    • It’s complicated, isn’t it? My current position is that ultimately, it’s not my place to make that decision for another person, even my own daughter. I want to arm her with the facts, the pros and cons, and let her choose. That probably means leaving it till later than ideal (early-mid teens perhaps) but ultimately, I don’t have to live in her body. I understand the benefits from a functionality point of view (which I don’t think your post really mentioned) rather than aesthetic. I can understand and support either decision and feel as though that is my responsibility as a mother.
      Nicole recently posted…Baby girl 3 – 24 weeksMy Profile

      • I hope to have the strength to be more impartial… Although my mom deciding I not have procedure to change myself despite body dysmorphic issues taught me to love the things I could and accept who I am. I hope to learn more from you about how to be more open to Addie and the idea that this may be something she wants.

        I didn’t mention functionality because it wasn’t mentioned in the workshop. I didn’t mean for this to be inclusive, I hope I didn’t seem too one sided. Truly it wasn’t mentioned, but if I post something outside of the conference topics, I will def post all the research! :-) Thank you for bringing it to light!

  3. I thought it was a great post and am not trying to debate or anything, just did want to point out that function was not mentioned. Things like the ability to wipe without a reacher, to reach light switches or ATMs or even the counter of a store without the need for a stool, to be able to drive any car without having pedals installed… Have you ever read “Dwarf” by Tiffanie DiDonato? She has the same kind of dwarfism as Maddy and she did ELL and gained 14 inches in height. I’ve messaged with her and she is SO SO happy with her decision because it has eliminated her need for tools. (obviously it has not taken away her dwarfism or joint issues, and she’s had a very strict rehab routine to maintain mobility etc). Worth contacting her if you do want to discuss the other perspective in an open way. I wish there was less contention between the two groups – Tiffanie shares her perspective without shoving it down your throat…

    • (sorry I don’t know why my replies are all over the place – I should learn to use a computer ;) hehe)
      Nicole recently posted…Baby girl 3 – 24 weeksMy Profile

    • martinkadelux

      I am reading it now! I have a few books going… hard to keep up, but I DO love her mentality and I adore Chandler, who is in the process now. Her attitude and her family support amaze me.
      I hope that I don’t come off as judgmental to others, I just meant it wouldn’t be my choice. Then again… I am not Addie, either :)
      I think as we educate, we can spread more awareness in our community and hopefully bridge the gap of judgement!

  4. Joy

    I agree that this would be a difficult decision. I totally agree that 4-5 is WAY too early. A child’s brain is working on gross motor skills until about age 9 when that window closes and the brain moves on to fine motor skills. I think that a child who is laid up for a huge chunk of that time would end up with some serious deficits in his or her gross motor abilities.

    I applaud you for wanting Addie’s input. I think if she is able to have some say in the procedure than the process wouldn’t be as hard on her. A four year old would have no understanding of the ‘why?’ for the ‘torture’ whereas a twelve year old would at least understand the goal.

    There are so many considerations, not the least of which are quality of life and the dangers of major surgery. I wish it weren’t such a hotly contested issue in the LP community because I think the subject deserves a great deal of consideration, input and reasoned debate from both sides. Everyone could benefit from listening to the other side’s point of view.

  5. My husband and I have very different viewpoints on this, and interestingly enough, I’m from the US and my gut reaction is “no way!” and he’s from Spain and is much more open to the idea. Sabela is a very determined, independent girl at age 2, and I am pretty sure she will have a strong opinion one way or the other. And my husband points out to me, if she wants to do it, how could I say no? And I don’t think I would, if I knew it was coming from a sound judgement. I do worry that the optimal age for the procedure is also the age at which we are most vulnerable to insecurities and wanting to be like everyone else, and I would hate for that to be the reason she wants to do it. I also worry about how the concept is presented to her. So, if as soon as she starts to realize her difference we start saying “oh, but you can do a procedure when you get older to be taller,” to me that us saying “you need to be fixed.” I don’t want to hide from her the fact that a procedure exists, I just don’t want to mention it like a salve every time life is hard for her. My husband doesn’t see it that way- to him, it’s a way to offer her a solution to a problem. So, ultimately, I think we both are in agreement that she is the one to make the decision, but we do not yet agree on how those options will be presented to her.
    Vanessa recently posted…Thoughts a Year InMy Profile

    • martinkadelux

      I have to remember to be impartial, too! It’s NOT easy- especially when the thought of surgery is so scary for any child.
      I will keep you in my thoughts and know that no matter what our ladies choose in life, we are there to support them <3

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