Physical Medicine and Rehabilitation

When I was seven years old, I was diagnosed with osteogenic sarcoma, it's a type of bone cancer. I went from no tumor to a tumor the size of a large orange in three weeks, right above my left knee and that took me out of my normal play like a child life into a world of hospitals and surgery and chemotherapy.

Most common reason for a child having an amputation of their leg is trauma. This may be related to power tools. It may be related to some sort of a vehicular accident. But there are also kids who have lower extremity amputations due to infection or sometimes cancer. Then there are a number of kids who have congenital limb differences. So they're born with a difference in the length of their leg and they sometimes will need surgery for that.

For my parents, it was a very big deal. It was something that they never imagined they would have to make a decision about. I remember my mom looking at the doctors just in disbelief, like, there's no way that we could get rid of my daughter's leg.

The parent's attitude and understanding about the amputation is critically important to the adjustment of a child with an amputation. The more love, patience, perseverance, and knowledge that they can bring to the scenario for the child will be helpful.

You'll have a big team that will help get you through this period of amputation. That team will include your surgeon, a couple of physical medicine and rehabilitation doctors, specifically one who specializes in amputations and another who specializes in pediatric rehab. You'll have therapists, including physical therapists and probably an occupational therapist. You'll have a prosthetist who will help sort out which artificial limb your child will use. And you'll have a number of other individuals like nursing and child life specialists who will help with the adjustment as well.

Mayo does a great job of having teams communicate with one another and each piece is just as important, and they understand that. And they work together in that way to provide the best care that they can.

If a child has discomfort after surgery, your medical and surgical teams will help to manage that pain. They'll do their very best to keep your child comfortable. And if needed, they'll consult a pain management team to provide additional assistance. Sometimes a child will have the sense of the presence of a missing limb following their surgery. And sometimes that presence will even be uncomfortable. But we have strategies to treat that as well.

When I started getting my prosthetic legs, I was very sports oriented. I just wanted to spend time with my friends and climb trees and play football. My mom however, wanted to put me in dresses and take me to church. So when they made my prosthetic, it was important that it be both functional and look nice. And they were able to do that for us.

We're going to talk with you about what your goals are for your child and what your child's goals are in terms of function. And then we're going to build a prosthesis that's custom for your child.

It starts with a plaster cast of my legs, so it's all form fitted specifically for me. I take it home and I try it and I let them know if there are any spots that rub. They do the alignment all with their laser pointers. And then I try it again just to make sure that everything is comfortable and fits and then we bring it back and they finish it off with all kinds of formal covering.

The prosthetist and the therapist will help teach your child how to take on and off the prosthesis, how to care for the prosthesis, and how to functionally use it.

It didn't take very much time at all to understand the concept. Our brains do their own work in rewiring how we're going to have to do this. Adaptation is just something of the human character, so when something changes, we just learn how to adapt. And so for me, I never really had to stop and think like this is how I'm going to have to do it. There were things that I perfected because someone was there to teach me. But for the most part, my brain was able to understand the concept.

Your child's prosthesis will need to be replaced every six months to a year during their growing years.

Some people have skeletons in the closet and actually do have a laundry room full of legs.

Pressure sores can develop because of the way a child uses the prosthesis or with growth. And so it's critically important that both the child and the family monitor the skin regularly for any areas of redness or irritation. It's much better to prevent a sore from happening than to have to treat a sore once it has occurred. That can really set back prosthetic use if it occurs.

The goal of the rehabilitation team is to restore function and quality of life. For a child, this will mean return to everyday activities such as play, school, sports, things that they love. This may require a little bit of adjustment for their prosthesis or some extra training from a physical therapist. But we fully expect that they'll be able to return to the activities that they loved prior to their amputation.

I can ride bike and I can ice skate and I can rollerblade and I can rock climb. I can play football and soccer and basketball. There is not a thing that I haven't been able to do this far in my life.

Return to school is obviously an important part following an amputation for a child.

Because I was only in third grade and it's a big deal for third graders to understand.

Sometimes it's helpful for the child or the family to contact teachers or principals at the school to explain what's happened. Sometimes the child will like to explain to their friends what's happened to them before they actually set foot on campus. So that they'll have a small core group of friends who will understand what they've gone through.

They brought someone and they showed a video and they explained to them that it will look a little different, but that I was still the same person I'd always been.

I think many children are just curious. And so they'll ask questions that if the child chooses to answer, will maybe allay some fears and concerns. Other times children perhaps are just fearful and don't understand what's happened to the child. And so they may lash out in ways that are not as positive. In those situations, I think engaging some adult help from a teacher or another trusted adult may be beneficial. There's so many resources available for children with amputations in terms of education resources online, as well as things like summer camps that have many other children who have gone through similar experiences and can share new ways of doing things, new activities, new techniques, new technology. All these things can be tremendously helpful for children and their family.

I didn't even think about the fact that it looked different. I just got right back into my normal life and as soon as I accepted it, everyone around me accepted it too.

Right after an amputation, there can certainly be challenges for both the child and the family. But with work and perseverance, we expect a great outcome for children with amputation.

For me, it started with accepting it and just beginning to live again and grew into something that allowed me to be a different person than I ever would have been before. So I'm very thankful for it. Children with amputations can do extraordinary things. They can do all of the things any child who doesn't have an amputation can do. We expect that. We hope that for them and we will help them reach their goals.

When the doctors first told me that they were gonna have to amputate my arm, my family and I, we pretty much all agreed that we weren't gonna let this stop me.

He said, "there is nothing that is going to replace your hand, but we will provide you with as many tools so you can function as normally as you can function." and that was a very good message to me, because I said, "I'm ready. I'm ready to do this."

Right from the beginning, I just decided I can do it. I can do whatever I want to do, and I'm not gonna waste my time feeling sorry for myself. I'm gonna spend that time learning how to do things differently and doing things I want to do.

Immediately after my amputation, I had a lot of phantom pain.

I could feel my hand, the hand that was amputated, and it was in a very, very tight, tight fist.

I've dealt with less of it as time goes on.

Your brain is still communicating with this arm that isn't there. I think that's very interesting.

The prosthetist is a very important person in the whole team.

He took a casting of my residual limb and then used that to build my prosthesis.

The prosthetist has to be with you all the way and say, "how is it working for you?" and if it's not working well for you, "what can we do to make it work better?" It takes some time, but it's well worth it.

My prosthetic device is an artificial arm with a hand, and then I have a mechanical elbow, and it comes up over my shoulder, the plastic part does. And I have a strap that goes around my neck and under my arm. With my shoulders, I can open and close my hand to some extent and pick up things.

I've had a whole assortment of terminal devices that go on the end of my arm. The nice thing about the one that I use every day is that it has a large surface area for gripping. And I can also adjust how tight it grips. The hook is like my workhorse. It's rugged, and it's simple. It works great for whether I'm fishing or hunting, splitting wood, or if I'm just tinkering with really small tasks. I always love it when I'm out and about and this little kid goes up and tugs on his mom or dad's pant leg, and he goes, "look, look, there's captain hook." And the parents will scold him, and I'll look at him, and I'll go, "arr." And it just makes the kid's day.

I'm on my third major prostheses. It's not uncommon for me to perhaps change in the middle of the day. I mean, it only takes just a couple of minutes, and then I'm ready to go to my next task. I learned that the company that manufactures all this prosthetic stuff, they were coming out with a new hand. It has a movable, powered thumb, so it can provide you with multiple different grips for gripping things. Plus it looks extremely cosmetic.

The occupational therapist was extremely helpful. She gave me the positive attitude that, "no matter what, you can do it. We just have to meet each problem as it comes along and say, well, how can I do this differently?" I went to my computer, and I thought, "I'm not gonna be able to type like I used to type." But I type with one hand now. Like anything else, it just takes practice, and your speed will come back. I was very right hand dominant. all my life, my left hand has just been the pusher. It's been the holder, so I had to have a little chat with my left hand and say, "hey, we're gonna transfer all these skills that my right hand did, and I'm gonna expect you to kind of do that." And so my left hand has done just fine. The brain's ability to transfer is remarkable.

I always loved hunting and target shooting. Right away from the beginning, I figured, "I still want to do this. I'm gonna find a way." We took some parachute cord and put a little loop on it that I could grab with my prosthesis, and I could then have more control of the gun. I was able to modify the pump on my shotgun, and that way, I was able to chamber new shells into it.

I can do whatever I want to do. We had them install a steering knob on the steering wheel. There are three switches right below it. One is for the directional turn signals. one is for the headlights, and the other for the windshield wipers. I can drive and be independent again. That was a big thing for me.

There were people, including my family, that were watching carefully to see how I'd adapt to boating. I had to figure out a way to run the throttles, so I crafted a device. Owning a reasonably large boat is like owning a second home. There's always lots of things to do on it. It clearly is a labor of love.

I didn't really start fly-fishing until I got to college and took this class and learned how to tie flies. I like fly-fishing because it allows me to escape. I can go find a hidden stretch of river and get away from civilization for even just for an hour.

We started going to the stores in town that had adaptive equipment all kind of devices out there. You'd be surprised what they have. I have a can opener that you only have to use one hand. It opens it for you. The thing I use the most is my cutting board. It has two supports in the back that hold, like, an apple or anything I want to slice. The needlepoint frame that I have has an arm that goes down and a piece that goes under my legs, and I can do my needlepoint just fine that way. It's been interesting, and it's been a challenge and a learning experience. I don't find my handicap that serious, actually.

I don't feel handicapped at all, to be honest. I just happen to be a little changed now.

Anybody who tells me I can't do something, it's like an automatic challenge. There's nothing that should stop me. No matter what, there's a way you can get to the top.

I describe my amputation as a combination of a journey and at times a real adventure.