Anyone with experience of amputation — Scope | Disability forum
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Anyone with experience of amputation

thetonges Member Posts: 1 Listener
When pregnant at 28 weeks we
found out and amniotic band had prevent development of ours sons right foot and ankle.
instead he was born with a large boneless mass (with one tiny boneless toe inside). It’s been struggle since then and even more so since he was born bit to cut a very (long) story short we have an amputation dats, 2 and half weeks away. Anyone experienced same diagnosis or experience of amputation at 9 months. As days tick down I’m more and more terrified 


  • SaraC_Scope
    SaraC_Scope Scope Navigate service, CP Network Posts: 36 Courageous
    Hi @thetonges

    Welcome to our online community.  I'm sorry to hear of your son's diagnosis and can understand how scared you must be about the upcoming operation.  I'm sure some of our members will be able to relate to your story and hopefully some offer some advice that will alleviate some of your fears.

    Please take care

  • janer1967
    janer1967 Member Posts: 16,457 Disability Gamechanger
    It may not be the same but I had my leg amputated 2 years ago I am 51. It is life changing and mentally hard to come to terms with. 
    I would say tho as your child is so young they won't know anything different. 
    On a positive when I go to the prosthetic clinic I see all the kids running around with their prosthetic legs and you would never know. 
    Also I had very little pain after surgery and now just get nerve pain on occasions.
    It will be a battle but with your support he will adapt.
    Feel free to chat if you want anymore info and good luck 
  • janer1967
    janer1967 Member Posts: 16,457 Disability Gamechanger
    Also I would add the after care I received from nhs was amazing from rehab to equipment and physio. 
  • Adrian_Scope
    Adrian_Scope Posts: 8,578 Scope online community team
    Hello @thetonges and a very warm welcome to the community. 

    I think your fear is very understandable. I haven't got any experience of amputation but I also have a 9-month-old with a range of conditions and I can only imagine how I'd feel if he was facing surgery. Like @janer1967 says, your son won't know any different at this stage and will very quickly adapt. I know it's not the same thing, but when my eldest was a similar age, she went through surgery and was put in a full-body cast (from under her armpits to the tips of her toes) and she very quickly adapted and learnt to pull herself around using just her arms.

    Do you have much in the way of support? Have the medical professionals involved in his care spoken much about after the surgery and any plans for the future? You probably have a million questions right now. 

    Please keep in touch and let us know how both you and your son are getting on. 

    Thinking of you both,

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