Amputation Versus Lengthening Again

Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time;
Footprints, that perhaps another,
Sailing o’er life’s solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.
Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.

A Psalm of Life has struck me today as pure brilliance. In that Oprah ah-ha moment sort of way! I guess I always like a footprints image. Maybe because of Nicholas’s unique foot prints. I do like to imagine that others will have an easier time on this particularly unique road through fibular hemimelia becaus we have shared and left our footprints behind.

There’s a conversation on the Facebook Fibular Hemimelia and Limb Lengthening Awareness page that’s taken on a life of it’s own. It’s the amputation versus lengthening question. It’s awful to read some comments which are neither personal experience nor fact based but it is what it is.

What it really is, is a very emotional question. When you have doctors tell you that there is no right choice, it really does not make the decision easier. I’ve said before that this is a choice parents should never have to make. To keep or amputate their childs limb. Never mind that there are likely doctors strongly advocating one option or the other. While they say it’s your choice.

Really, what happened to “there’s no right choice”? Of course a doctor is likely to think the treatment they are familiar with is better. First of all its what they can do. Secondly they have seen their patients thrive. They’ve watched the two year old with her first prosthetic leg taking her first steps or the two year old after her first super ankle surgery and lengthening doing much of the same. Really as hard as it is to believe kids really will be ok either way. They will find their way, accept their difference and live their lives. Thank god for that! It’s not easy but children are amazingly adaptable.

Still there will be moments when as a parent you will have to explain your choice. “You were born this way” or “God made you this way” will only fly for so long. One day you will have to face your child and say “We chose this for you because…”. You will owe them the truth. You can’t make a choice like this about another persons body and not explain it. I’ve had this conversation with Nicholas. He knows that amputation was the alternative. So far he feels we made the right choice. Had we chose amputation would he feel the same way? I think so and hope so.

Once you make the choice you have to make it right for your child. I am sure most people do just that. But we all then become attached to our choice. It’s impossible not to get defensive when I feel someone is suggesting parents who choose lengthening are choosing hell or torture. I try not to. Sadly reading that a child with an over 20cm difference, needing multiple ankle surgeries, and a super knee and an eight plate, who has two toes, etc… reading that this child, my child, could be doing great makes people who chose amputation for a similar or lesser level of deformity get defensive. I get it. Doctors told them it wasn’t possible. But it is.

Just because it’s possible does not mean I think parents who choose amputation are making the wrong choice. Just don’t come to a support group and say lengthening is not an option in such a case. If you were told it wasn’t an option for your child say that share your family’s story. Maybe your footprints will help someone else take heart again!