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Thread: 13 year old autistic daughter - will need surgery

  1. #1
    Join Date
    May 2012

    13 year old autistic daughter - will need surgery

    I have not posted since our last visit to ortho where he suggested a show lift. It has been 6 weeks and the show lift did not do a thing. In fact after looking at her new xrays yesterday the surgeon thought he was going to have to fix her leg length discrepancy before fixing her scoliosis. The discrepancy acutally turned out to only be 1cm which is what the shoe lift that she has is - so there is no question now that it is all her spine. Her curves are slowly getting worse and it has been determined that she should have surgery to have it fixed. I knew that this was probably going to be the outcome after doing so much research but now I am a nervous wreck and feel sick to my stomach.

    I feel confident in our decision to do this but everyone now and then there will be a brief moment of second guessing. Can anyone share their experience and feelings about the decision to have your child undergo surgery like this. I know in the long run it will benefit her but boy my emotions are running wild right now,

    Any advice would be greatly appreciated.

  2. #2
    Join Date
    Jan 2008
    Hi. Hopefully several parents will write about their feelings.

    When I learned my first kid needed surgery, I was also sick and scared. Her twin was right there being evaluated also and when she heard her sister needed surgery she started crying uncontrollably. The kid who needed surgery was not visibly upset. I was so busy trying to talk to the surgeon and asking the other kid to get a grip that I really couldn't focus much more on my feelings in that moment. She never got a grip until we left the building. My twins are like each other's parent it seems... they would rather go through bad things than have their sister go through it.

    The only way I got through that surgery is having total confidence in the surgeon. That's how I did it in a nutshell.

    For the second kid, I had seen the quick recovery and excellent results of the first kid and while I was upset and scared, I wasn't as upset and scared as the first time. My husband must have buried his feelings deep about the first kid because he let it out upon hearing the second kid needed fusion also. He was mad a hell at nobody in particular and at nothing in particular. He was just mad. I am guessing he thought the brace would work because she was 100% compliant. That's the only thing I can think of.

    What got me through the second kid's surgery was seeing the first kid returned to looking and feeling normal. That's a big incentive for staying sane through the second surgery. I did not even stay in the waiting room during the second kid's surgery but was driving the other kid to and from school. I was okay and calm enough to leave and drive around. My husband refused to leave and that was fine. One of us had to be there and one had to drive. I got back and saw the surgeon leaving the hospital. I was on the phone with my husband about the surgery.

    The reason they do surgery on kids is because they have a very good idea that they will be better of with it than without it. Normal is off the table. It is entirely a game of cutting losses.

    You will be fine, especially after you see the results and your daughter is looking and feeling great. I think that's why they ask other parents to talk with parents facing this. I have done that. They were in a grey area (not immediately necessary but would be) and weren't convinced they should proceed at that time so I told them that was the right decision. You have to be on board. You have to own the decision. For kids who are not in a grey area, I would have gone into the cutting losses argument.

    Good luck.
    Last edited by Pooka1; 07-15-2012 at 06:23 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine

    "We are all African."

  3. #3
    Join Date
    Sep 2003
    Northern California
    This thread might be of interest.
    Or, this one.

    Also, moved this thread to the Parents forum.
    Last edited by LindaRacine; 07-15-2012 at 06:20 PM.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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