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.