This evening I interviewed my mom over the phone (she lives in Spokane, WA) about her experience being the parent of a child with fibular hemimelia. Here’s what she had to say…
What was it like when you first found out that I had fibular hemimelia? When was that?
Unlike today, they only did ultrasounds back then if there was cause for concern so we had no idea there was anything abnormal until you were born, so when you were first born doctors counted toes and noticed that you had a bump on your leg. They didn’t know what it was, but a day after you were born the doctor had done some research on his own and thought he knew what it was. He didn’t know what to do about it, so he referred us to a doctor at Oakland Naval Hospital to confirm the diagnosis and let us know what options we had. It was upsetting mostly because we didn’t really know what was going on, but we were grateful that it wasn’t anything life-threatening. Your grandpa talked to a friend who was an orthopedic surgeon and got some literature – there were only about 75 cases in the literature at that time.
How did you react when you were first informed that amputation may be the best option?
We knew from the beginning that amputation was an option, but back then they waited until later to do the amputation because they didn’t really know how they would keep the prosthesis on you. So, they waited until you were walking, then made you a brace, and really waited until the leg length difference was significant enough that they needed to amputate. By that time, we had gotten at least 4 opinions from doctors in California, Iowa, and Texas, and they had all said the same thing – that amputation was the best option. That definitely made it easier for us because the opinions were consistent and we had almost 2 years to think about it before we actually had to make the decision. It was hard explaining it to some people because they had a hard time understanding why we would choose to amputate your foot, which had 5 toes and looked like a “normal” foot, but we knew it would never be that functional, so amputation was the best choice for you.
How would you say my childhood was different than that of my peers?
Like you mentioned in your recent blog, you had to put your leg on in the morning, but you could do everything you wanted to do. You didn’t swim with your leg on, but you became very adept at hopping and it never seemed to bother you to take your leg off in public.
How did you know if my prosthesis was or was not fitting when I was too young to tell you?
Honestly, you were so rough and tough on your leg that you would often wear it out before it got to the point of not fitting anymore. I remember you used to wear holes in the front and wear the top edge down so sharp that it would start tearing holes in your pants. You also had to go in pretty often to get wood added to make your leg taller as you grew, so we saw the prosthetist pretty regularly. We would also check your skin and if it was really red – particularly on the bump on the front – we would keep an eye on it and take you to see the prosthetist if it didn’t get better.
When do you think I first realized there was something different about me? How did you handle that?
I’m not really sure… maybe in kindergarten and only because I remember you coming home and telling me that someone was teasing you and your teacher said something about it. I don’t remember you ever being teased other than that, but I think you may have realized there was something different because of that experience. I think you told me about it and then I wondered how you reacted and then I don’t think you even took it that way… I think it was your teacher who realized maybe it wasn’t good what the other kid had said and she said something to you about it, so the teacher was really the one who brought it up. I think we just talked about if someone did tease you how you would react and what you would say to them, and I think I just encouraged you to be honest and factual with them and tell them that you were born without a bone in your leg and you needed a prosthesis so you could walk.
Did the way you parented me differ in any way compared to how you parented Sam (my brother)?
No, if anything I think I allowed you to be more independent and really encouraged you to develop those skills of independence because I was more conscientious about not being overprotective with you.
Did you seek out support from other parents? Was that even really an option?
That wasn’t really even an option. Like I said, the literature only had 75 cases, so our support came mostly just from the doctors. I remember when we were in Texas at your prosthetist’s office, they wanted me to talk to a family because the kid’s parents were struggling with the decision to amputate –one parent wanted to amputate and the other didn’t. In my experience, I’ve had more people asking me if they could give my contact information to other families and I don’t really remember ever meeting anyone older than you with fibular hemimelia, so I don’t even know if there were other parents out there at that time.
What made you decide to give my first prosthesis to Dr. Deeney (the surgeon who amputated my leg)?
That I remember clearly because I was so interested in what a prosthesis would look like for a child because I only really knew prosthetic arms with the hooks on them and nobody had one to show us, so I decided to give it to him so he could have something to show other parents.
Did you ever have hesitations about letting me participate in certain sports/activities, etc.? Did other people?
I never did, but other people did. I remember we took you to gymnastics and swimming and even during school, I would just tell them to treat you like they treat everyone else, so I think other people just took that attitude. In soccer, they were worried about you hurting someone else, so they made us put a shin guard on your prosthesis so you wouldn’t hurt the other kids. It didn’t make sense to me, but it wasn’t a big deal so we just did it to make them happy.
How did you encourage me to develop confidence and positive self-image?
I guess I was fortunate because I had the education in early childhood development (my mom specializes in early childhood education), so it’s just how those of us in the field do that. Mostly it’s just making sure you aren’t doing anything for a child that they can do for themselves. That’s probably a really important point because so many parents do too much for their children and that negatively impacts the child’s confidence and self-image.
Do you remember ever having to explain my amputation to Sam (my brother)?
I don’t remember that, I think he just knew you as you and accepted that. I’m sure we talked about it, but I don’t remember anything significant.
Did you ever have to fight for me to be able to participate in activities at school or otherwise because people were afraid I would get hurt (or that I would hurt other people)?
Just that one time with soccer because they were afraid you would hurt other people.
Is there anything else you would share with parents who may be new to raising a kid with a limb difference?
I think the most important thing is just to treat your child like any other child and just be sure you’re intentional in not doing anything for them that they can do for themselves so they can develop confidence and a positive self-image.
If you have any questions you’d like to ask my mom, please feel free to contact me.