Question about amputation (sorry long) — The Bump
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Question about amputation (sorry long)

Our DD was born missing her knee joint, ankle joint and tibia in one leg.  Every doctor we've consulted with has recommended amputation.  We are so torn with all the breakthroughs in medicine these days who's to say that there might not be something in the next five years that could be done to correct her leg. 

I guess the other part that weighs on us is that the way her leg is, well she's not going to die from it.  And she's already had heart surgery (and will need more in the future) which worries me that something will happen if she has any surgery.

If you had to make this choice, how . . . what helped you decide that it was the right thing to do?  DH and I change our minds every other day!  Right now she's 10 months old and I at least want to wait and see how she crawls, etc. but time is flying by and i feel we are being pressured to make a decision now.


Re: Question about amputation (sorry long)

  • So I'm guessing that if you don't do the amputation she would have to use a wheel chair, but if you do she will be able to use an artificial limb?  I'm not sure if this is actually what my aunt went through or not.  I have a cousin that doesn't have a leg from the knee down.  I was always told that it was the result of the umbilical cord being wrapped around his leg in the womb, but I've never really asked if he originally had a limb that didn't develop, although I'm guessing this was the case.  Honestly until this moment I've never considered it.  He's only 4 years younger than me so I've just grown up knowing about it.

    My cousin is now in his 30's and I was too young to remember when he got his first leg.  I do remember growing up that keeping the fit right with a growing child was one of the hardest parts.  He would frequently grow out of his leg before the insurance company wanted to replace it and when it was ill fitting it caused him pain to use it.  I'm sure they've made a lot of advancements with this by now (this was almost 20 years ago) but I would ask about that.  I actually remember him getting around quite well without it.  He was obviously a bit slower running than other kids, but always rode a bike just as well and could even roller skate.  

    What are the disadvantages are there to waiting a while to make your decision?  Are they worried that it will delay her mobility?

  • wow i can't imagine having to make a decision like that.  we have a limb difference but it's different from what you guys are dealing with.

    our son (to be born) has a left elbow joint and a nubbin beyond that, probably 1/3 of what his forearm should be, length-wise, and no hand/fingers.

    aside from the balance issues of arm vs leg, we were told by one really great dr that kids born like this don't know they are different because they've always been like that, and they just adapt to things more easily.  I am thinking that's why they would push for you to do it sooner rather than later, so she doesn't miss the limb and struggle to adapt to the change in addition to the new issues that would come with it (balance, etc).  I would think those differences would become more pronounced as she develops more motor skills.

    have you talked to other parents who have kids with leg limb differences/amputations to see what they think?  I think while there is always a possibility that technology and surgery will improve for the future, they will also be improving prosthetics, probably with more success than the technology that could potentially correct what she has now.   ((hugs))  

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  • Have you had a chance to ask a few different Drs about their thoughts? If that was a possibility maybe you can have a consult w/ a couple different Dr's just to see what they say, if they would have a different course of action or if they any insight/ point of view.

    Good luck!

    Max 4-08-08 and Michael 2-03-91 (19 years olds)
    image Both boys were born w/ hirschsprung's disease, you find yourself facing this dx, please feel free to ask me any questions.
  • We are in a similar situation with our son. His right femur is significantly shorter than his left and right now we are unsure whether he will be better off if we amputate his leg and fit him with a prosthetic or if we should leave it for now and look into limb lengthening surgery when he is older. He is really close to walking, and he will most likely be given a shoe with a lift in it within the next couple of months. Both my husband and I are uncomfortable making that decision on his behalf, but we both really trust and respect his doctor, and will most likely go with what he recommends.


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  • Thanks for the replies Ladies.  We are going back to Shriners Hospital next week and there they hold clinics on Fridays so we'll be able to meet other parents that have been in our shoes. 

    I think if we do nothing she would be able to get around with a walker or crutches, maybe a scooter would work for her also.  She moves her foot a lot and plays with it quite a bit too, so even if it goes now I think she would know that something is different. That's what makes it so hard, if she didn't have feeling in her foot, it might make our decision easier.

    I found another mom on FB that her DD had very similar condition and they waited to amputate until her DD was 20 months old.  She said now DD won't wear her leg and prefers to walk on her knees - she's over 2 yrs. old now. 


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