When talking about amputation versus lengthening, I have found that some people have an orientation to one option or the other. I am oriented toward lengthening partly because I have witnessed it working for my son but I also happen to think that removing a limb seems sort of last resort-ish. This amputation as last resort feeling, came before the experience of watching Nicholas do so well.
I realize that there are most certainly times when amputation really is the best option. If there is not a functional foot then I understand that amputation will be the logical choice. The fact that prosthetics have come so far and amputee’s lives are so very active is wonderful. I am happy to see any child with fibular hemimelia or any other limb deficiency living life to it’s fullest.
But, and this is a big but, I do happen to think that lengthening is worth considering, even for sever cases. Without a consultation with a surgeon who has had significant and successful reconstructions with lengthening, you will never know what’s possible.
So why would anyone discourage parents from seeking the opinions of doctors with such experience. Why not try to find a doctor who does the treatment you hope could work for your child. Surprisingly I have seen this happen on two occasions in which parents were discouraged from seeking the opinions of surgeons with lengthening and experience. I will only share one story today which included me being pushed out of an on line support group by a moderator with an amputation orientation. That’s what I call it in her case, amputation orientation. She does not come right out and say it, which to me is misleading, and for very mild deformities she is OK with lengthening, making it almost a cover so she can say that she is not against lengthening. However I can say with certainty that she was against me sharing information about Nicholas.
When I started writing about Nicholas’ experience and success with lengthening, at first she did not comment. Other group members wrote that kids who undergo lengthening at a young age do not meet milestones (easy to disprove with my boy), that the pain medication effects development (also easy to disprove, at least in our case) and they wrote various other negative things about lengthening. My response was to ask where that information was coming from (cite some sources!) because none of the children I knew who had similar surgeries to Nicholas had those problems and I know more than a few families on line.
Soon the moderator started adding what felt like warnings, after my posts especially if I wrote to a parent of a new baby with a limb length discrepancy and told them how well Nicholas was doing. Other parents could write about successful treatment through amputation without any commentary. Why couldn’t everyone stick to writing about the option they chose and therefore know more about ranter than writing negative things about the option they did not choose.
Of course I engaged in debate (mistake one) and it got heated (mistake two) because I felt that I was being censored and criticized for choosing lengthening for Nicholas. The moderator’s claim was that you should not lengthening if a discrepancy was to be more than 7-15 cm. Nicholas’ estimated discrepancy is 20cm. She even went so far as to write that kids like Nicholas choose to get amputation’s later in life. Yet somehow I was the one being insensitive. She had written comments to the group about when lengthening is and is not appropriate and also emailed me privately to tell me that that my posts were upsetting and offending other parents. I only wrote about Nicolas and our experiences.
This moderator is obviously a caring person or else she would not put so much time into the group and her web site. But she has an amputation orientation which interferes with ability to be a moderator. Finally I left the group. I suspect she was going to toss me out anyway. Then she deleted every post I ever wrote except one. When I left the group I had hoped that parents could at least search the archives and read about the boy who, with a 20cm expected discrepancy, was doing great with lengthening.
A few days after leaving I started getting emails from other parents who had similar experiences with this moderator. Some had decided to water down their responses and stay in the group but some like me had left. I asked one parent who was still in, to give my email to anyone she though I might be able to help.
I think every child has the right to have the option of lengthening at least investigated. If the fact that Nicholas has had success with lengthening is offensive to anyone, my guess would be that it reflects their feelings about their own choice, much more than it reflects anything about me or my posts. Still I started to wonder why I was getting so very upset about this lady. If parents want to find out about lengthening they can. Anyone in their right mind would seek opinions of various professionals and not just some moderator of a support group.
Still thinking that she could be swaying people bothered me, probably too much. So I decided to take a step back from the forums and groups and it helped remember that I am not solely responsible for spreading the word about lengthening (gotta keep that ego in check). But it is wonderful to be able to give parents hope through Nicholas’ story. There is information available, beyond the amputation as standard treatment stuff, for those who seek it (much more than there was six years ago) and there is hope for saving limbs like Nicholas’. It’s my orientation, and it’s right here.