The Great Walking Debate

Surgeries A Tough Call

Recently, I had a parent contact me concerning her seven year old daughter with Cerebral Palsy. The child needed some extensive surgery done but, when the mother talked to her about the surgery ,the child expressed her wishes not to have it done. The mother had spoken to several adults with disabilities, and they all seemed to agree that she should not force the child to have the procedure. One person even compared it to rape. This whole thing had me a bit confused and angry so, I sat down to think about it. The following is my response and I hope that you might get something out of reading it.

I was seven years old when I had my first set of surgeries, and I remember every minute of it. I had heelcords, hamstrings, abductor releases, and a muscle transfer. I was in a Spica cast for six weeks. I even remember going trick or treating in the cast. All the neighborhood kids thought I was the coolest mummy around. Anyway, I guess, my point is that I know everything you are in for when you decide on surgery.

I am sure you have figured out by now, from reading all of my essays, that I am big on explaining everything medical to your kids and treating them as adults but, only to a point. A young child can not understand or make decisions about whether or not to have surgery....its just not possible. There will come a point when your child gets older where all of this will hit her and, she won't want to be in a wheelchair. She will look at you then and ask you why you didn't fix her. That moment has happened to all of us and, my mom and I both agree that it is the most painful moment we have ever been through. The thing is, it is at that point that your child will have to look at herself and decide who she wants to be and how much of a role her disability is going to play in her life.

When I first started looking into the SELECTIVE DORSAL RHIZOTOMY for myself I was about fifteen and I decided that I needed to improve myself. The thing is that when I went to see Dr. Park for the first time his physical therapist took one look at me and started saying, "Why wasn't this tried or this surgery done." Dr. Park stated at that point that if I had, had the SELECTIVE DORSAL RHIZOTOMY when I was five I could've skipped all the other surgeries; this after two hamstring and heelcord releases, abductor releases, muscle transfers, and bilateral ankle ostiotmies. I looked at my mother then, filled with more anger then I have ever felt, and I asked her "Why?" Why didn't I have an SELECTIVE DORSAL RHIZOTOMY sooner? Why did she put me through all of those other surgeries, and yet, I was still such a mess? The thing is that she didn't know about the SELECTIVE DORSAL RHIZOTOMY, no doctor ever mentioned it, and we had the best doctors in New York Here's the thing though, I didn't care when I was little. I fought my mom every step of the way, every PT and OT session I screamed and resisted. I was just like any other kid I wanted my life and, I didn't see how it needed any improving. But, it mattered then, that moment in the doctor's office when I turned to my mom and asked "Why?' and, it matters now. I work my butt off in therapy now and I gave up school last year to do rehab. Everyday I wake up and wish that I could grasp a cup with my left hand, or that I had the balance to walk without my crutches, or that I could cross my legs.. and I am a hundred times better the before my SELECTIVE DORSAL RHIZOTOMY.

Some days all the "ifs and would haves, and could haves,” kill me but, the truth is that I only took up this whole thing as a teenager. My mom made the decisions for surgeries one and two all on her own. If it wasn't for her courage I wouldn't have been able to sit up, walk with crutches, or a walker my whole childhood. The SELECTIVE DORSAL RHIZOTOMY might have still helped but, the results wouldn't have been nearly as good. I can tell you without hesitation that I would never have forgiven my mother if she did not make an effort to help me. It really doesn't matter too much what a young child wants at this point because ten years from now she will look back and say "I was a kid what did I know."

A lot of CPers will disagree with me because their parents put them through things that didn't work and, they are bitter. Or they are just adults who have gotten so used to thinking for themselves they forgot what being a kid means. You don't call it rape when you force you kid to take their antibiotics and, this is no different. Frankly, that analogy pisses me off.

There is one key thing to keep in mind when discussing surgery...no matter how hopeful you are about the outcomes of the surgery DO NOT make any promises to your child. Through all of my surgeries my therapists and my doctors have told me "after you do this you will be able to walk independently or ride a bike etc....." Very few promises have been kept. I'm not saying this to discourage you, as each case is different, but I will tell you that you don't want your daughter to feel you lied to her or she will quit and not work. Tell her that this *might* happen but, that if it doesn't happen right away you will be with her to keep trying. Don't make it sound like a miracle.

The 1 year anniversary of my Rhizotomy just passed. The doctor promised me that within six months of my surgery I would be able to wear a small ankle orthotic and, by the one year mark I would be off braces completely. I wore the ankle orthotic for six weeks before they put me back in a full AFO and, I get my new braces another whole AFO..I will not get out of my braces this time or any time. I hate the doctor for all his promises. So, don't promise OK?

When it all comes down to it now...I have to some how find a way to make peace with what wasn't done or couldn't have been done. I have to try and accept that my ability level now is most likely the way it is going to stay. There are really no more surgeries or treatments out there for a kid my age. In the world of disabilities I am old and passed the molding stage. That is a very hard thing to accept but, I know my mother tried and I know I tried and that helps.

Just remember to ask yourself when you are thinking about surgery, what do you want your child to say when she is eighteen??

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