Fibular Hemimelia Q&A

I thought I would share some responses to the most commonly asked questions I get via email, from parents who are pregnant or have a newborn child with Fibular Hemimelia. I hope this will be helpful for others. I am always available to answer additional questions via my email, as well.


1. How does your child swim? Does she wear a special prosthesis?

For us, it depends. We let her decide whether or not to wear her prosthesis in the water. Most often she chooses to play without it, and she doesn't wear it for her swimming lessons because it's easier for her to learn without it. Once she learns to swim, I will also have her practice with it on, just to make sure she could handle survival swimming if she were to ever fall into deep water (because if she ever was in danger, she may very well have her prosthesis on). If she wants to do a lot of walking or moving (especially at the beach), sometimes she chooses to wear her leg. We are okay with it getting wet, since she outgrows them fairly quickly at this age and we don't have to worry about it degrading over time. We  make sure to dry it thoroughly so it doesn't rust. Right now, we actually have two legs so we an alternate if one is wet. Sometimes we use an old leg in the ocean if we have one handy. It won't fit perfectly, but it will usually work well enough. Another thing: the prosthetic tends to fill up with water and get heavy.


2. How does/will she take a shower? Go to the bathroom at night?

Obviously, we are not into showers yet. But I think Anna will have no problem. Her residual limb is long enough to where she can bend down on it and balance. We might end up putting a handle on the shower for balance, or a chair that she can sit in if she needs one to shampoo her hair. I personally think a chair would make more sense. I'm pretty sure she will find a way to manage- she has with everything else. These kids are amazing!  As for the bathroom, Anna is potty trained and has no trouble getting out of bed, going to the bathroom, and using a normal sized toilet by herself (and she only weighs 26 pounds). Remember that they will learn to be mobile easier than you think.


3. What are the financial implications for the future?

I won't sugar coat it. Prosthetics are expensive. The early, most simple ones start at around 5K and they get more pricey as they get older, anywhere from 15K to 100K. It's definitely a financial commitment, and that's hard, especially if you have a high deductible as we do. We are in an ongoing conversation with our prosthetic clinic. Shriners Hospitals used to cover care at no charge, but that has recently changed. Just prepare to spend a lot of money on medical expenses. Maybe it means you have to cut back your lifestyle, but I can't think of a better reason to do so.


4. Were you worried when you had a second child that there would be something wrong with him or her?

I was not worried about having a second child with a birth defect. FH has not been shown to be genetic, and I trusted in the science that came to that conclusion. That said, I was very careful to avoid medication, contracting illnesses, or exposure to teratrogenic chemicals during the first trimester (as most anxious mothers do :)


5. How did you know what treatment decision to make? Can you give me any advice on navigating the options?

I would highly recommend getting at least 2-3 opinions. Most people head to their nearest children's hospital, which is fine (that's what we did). Problem is, most surgeons only see a few cases like this a year, if any, which means they have much less experience with outcomes. Places like Shriners Hospitals for Children specialize in orthopedics. Their surgeons see patients with FH daily, whereas surgeons in other hospitals might only treat one or two per year. That said, each surgeon is obviously different. I think it's definitely worth checking multiple places. Make a list of questions and see how knowledgeable the surgeon is. Ask what your child's projected leg length discrepancy would be. Ask how many amputation/osteotomies they do each year for children with a missing fibula. Ask what kind of amputation they prefer (Boyd, Symes) and why. Ask what their proposed timeline for treatment would be.   We were only comfortable doing the surgery around age 11 months, which is when Shriners' surgeons choose to do it.


6. Will I always feel this sad and anxious? I am so afraid of what this means for my baby.

No, you will not always feel this sad. If you've ever felt like this or like this, it may be hard to believe. The first two years are  hard- really hard. But all that sadness, grief, and anxiety really, truly goes away once you see your child thriving. I honestly have trouble remembering how upsetting it was three years ago, because things are so different now. There are lots of challenges and my heart still aches on some days (though honestly, much more regarding her food allergies and asthma than her prosthesis). Certain situations can be hard. The first time Anna tried to walk in plastic princess high heels like her friends, when she discovers a limitation, when she meets someone new and gets asked lots of questions. But they learn to handle it, and so do you.


7. What can I do as a parent to help my child develop a healthy view of himself/herself before they start facing some of the obvious challenges of having a disability?

As a parent (and a therapist), I believe it's important to be open with children. Talk to them about it. Don't pretend like they aren't different; they are. And they will come to realize it. But help them see that it doesn't have to be a bad thing. Help them build their identity by introducing them to books, toys, media, stories, and people with amputations (here is my list of resources). Model for them ways to respond when people ask questions (stay positive). Teach them that people will be curious about things they don't know and that they can expect questions and looks. At the same time, it's okay to educate them. I was always advised not to set limitations on my child and that was the best advice I've received, because there were times I've been tempted to tell Anna she 'can't' or 'shouldn't' do something (like walking around in those heels!), and she figured out her own way. I let her fall down, I risked that she might get hurt. I held my tongue. And she surprised me. She didn't know any different. Educate her teachers on some of these things. Here  is a link to the lesson I did for Anna's preschool class.

8. Any practical tips for prosthetic wearing? How do you handle any issues that arise? I feel clueless as to how to make sure my child is getting the best appliance with the best fit. How do I recognize if there is a problem?

I cannot express enough the importance of finding a clinician who is skilled working with children and whom you feel comfortable with. Fit is the most important thing and it's hard to get just right as they grow. Anytime you notice that your child is walking even a little bit differently, take them in to their prosthetist to have them evaluated. Kids can develop poor habits quickly, and they are the experts at telling when an adjustment is necessary. I would also recommend going in every 3-4 months at least if you don't notice any changes, just to be sure. Kids grow super fast. If your child's skin starts to get irritated, STOP wearing the prosthesis as much as possible. It will only get worse, and if it goes too far (like developing a blister), you may have to be off the leg for a couple of weeks, which is clearly a complicated thing. Any abnormalities on the skin usually need to be addressed right away.

9. Any tips for dealing with questions/stares/comments and potential hurtful things down the road?

I'm not an expert at this, and I'm still learning. But staying positive seems to really help. Assume the best about people's intentions. Looking is inevitable and human nature. Helping the kiddos be comfortable with it is easier than trying to get people to not stare or hoping your child won't notice.

I tell Anna that any teasing or unkind words says more about the other person than it does about her: some people are mean because they are hurting inside. Some are mean because someone is mean to them, too. Some people are just curious because they have never seen something like that before. Some people are mean because they don't know any better. But whatever the reason, it doesn't say anything about YOU. I try to teach her that every kid struggles or is different in some way, sometimes it's just more obvious than others.

Once I heard Anna tell another little girl that when she got older she was going to have two real legs. It broke my heart. As kids get older, they will go through their own process of realizing what's different about them and how to incorporate that into their identity It's important to be there for them, acknowledge their feelings, and not try to make it all better or give cliche, pat responses. Just be there and show your support and love, and that you believe in them. That's all I know to do.

Oh, and remember that kids pick up on and recall what you say about them to other adults. So watch your words, even when you think they aren't paying attention. Don't talk about them as if they weren't there, and respect them the way you would another adult. Remember that you are shaping their view of themselves by your words- not just to them, but to others, as well. I'm always messing up on that one.

I hope that was helpful!