This is an emotional topic. I have been criticized for writing about it repeatedly but you cant participate in the support groups with out facing this question again and again. It’s one of the reasons we need the support groups.
Amputation or Lengthening
One argument that drives me bananas is that many kids who go the lengthening route end up choosing amputation for themselves because it doesn’t work out. Many? Really? I just don’t think that’s an accurate statement.
I would say that almost ANY kid that goes through several surgeries and ends up choosing to amputate creates a story you will hear about it. Media loves that kind of story. It’s tragic and triumphant. Now consider a boy who had 13 surgeries and was doing great and just keeps going even though it was hard sometimes, he stays the course. Would that be newsworthy? One reason I have this blog is so parents making this choice can read about a kid like Nicholas. There are many more Nick’s than kids choosing to amputate, that’s a fact. It’s just not news.
Needing surgery and a brace to get to the level of function you or I have is not a reason to give it up my child’s limb. Nick’s ankle bones were fused, some obviously not even present, his leg was bent, shortened, missing toes, I could go on. But it was his and it works. Nick having had many surgeries, and needing more is not discouraging to us. It is part of his story, part of who he is. He is strong and beautiful and doing great. Sorry if that’s not the kind of success story people care to hear about (boy keeps leg… life goes on).
You would never know what Nicholas has been through by looking at him. Even Dr. Standard said that after watching the video of him running, however, Nick would be proud to tell you! So the fact that people would never know isn’t important to me. I am raising a child who wants people to know who he is. I’ve read this argument from amputation parents but seriously imagine summer and my kid and yours in shorts… guess what? Everyone knows. Prosthetic leg or leg full of scars are both pretty visible. Make it ok for your kid. That’s what matters. What other people think and know does not matter.
I am not saying lengthening is better or amputation is worse. What I believe 100% is that every case, every child, deserves to see doctors who know how to, and have had success in reconstruction before deciding it can’t be done!!! It saddens me to read about cases just like Nick where doctors told parents reconstruction was impossible. Maybe due to a larger than 20 cm projected difference or fused ankle bones. In the end thats about as inaccurate as you can get. It’s possible. I see it. Choosing amputation has to be a really difficult choice, but own your choice. Make a fact based choice. Don’t say ‘many kids who keep their legs choose to amputate them’. It’s just not true. I am not saying it never happens but suggesting many do, indicates a high percentage. That’s not reality.
There are reasons to amputate that are outside the realm of the medical facts and there are medical reasons outside the orthopedic facts. I respect parent’s who have to make that choice too but if you can’t own it don’t scapegoat and say lengthening doesn’t work and those kids choose to remove their legs.
In our lives success looks like Nick playing basketball after school. Nick joining the swim team. Nick running to meet the bus. Nick does not need people not to be able to tell. Nick does not need to be on the news to feel like he is a brave boy with a big success story.
Look at a specific doctors cases. How much fh has he or she treated and how? How successful has he been with either option? You wouldn’t let the chevy trained mechanic deem your honda a lemon would you? You’d go to a honda trained mechanic to have your car evaluated. Believe me I do not enjoy comparing our children’s legs to motor-vehicles but its an analogy that has been used before because it fits.
The irony is that if Nick’s leg was no longer working for him, I believe Dr. Standard would be the first person to suggest we consider amputation. I know that what matters to him is that Nick be able to live his life with mobility, doing what he wants to do. He is teaming up to create this brace Nick has got because he is looking at the big, long term picture. It’s not just about what surgery he can do. It’s about Nicholas. Dr. Standard is obviously a very successful surgeon but I don’t think he measures himself against others or by public accolades. For him it’s about the kids and I can’t help but suspect that for him success is watching a video of Nick running down the hall with joy.
the anatomy is there
the doctor has tweaked it
in the operating room
again and again
with metal and wire
and saws and drills
outside looking torturous
through each and every step
nothing worth doing is easy
it’s a success story
the grand finale
life going on
step after step after step
and then he takes off