Posted by Karen - August 10th, 2014

Posted by Karen

If you have a kid, chances are you’re familiar with parental guilt – there’s always something to worry about and whether or not you’re handling it right… But if you have a child with Fibrodysplasia Ossificans Progressiva, that guilt thing can go to a whole new level.

See, one of the “delightful” features of this genetic disorder is that if person with FOP suffers an injury, even a fairly minor one, the faulty gene can go haywire and cause a swelling which in turn leads to new bone formation and progressive disability. As a mother or father of a child newly diagnosed with FOP, this means learning that you need to be extra vigilant to keep your child, especially if very young, safe. (Lends whole new meaning to the term “helicopter parenting”, sigh.) It’s an unfortunate fact, however, that parents of FOP kids are human, meaning you can’t be 100% all-seeing and all-effective – basically, stuff’s gonna happen no matter how much you watch over your child. And when that stuff does go down, FOP parents sometimes beat themselves up over it. “If I had only realized that [insert situation] would occur, I could have prevented my child’s flare-up (or the result of it).” This can eat away at you if you let it.

In our journey with my daughter Miranda’s FOP, I’ve been pretty good about keeping the guilt thing under control. Truly, I do understand and appreciate that I have no cause to berate myself when Miranda suffers a worrisome trauma, as long as I’ve been doing my best to be watchful and keep risks at an acceptable level. Recently, though, we had an experience when, for the first time in probably 5 years, that guilt thing got to me.

If you’ve been reading my blog posts, you’ll know that at the end of May this year Miranda broke her leg. It was a minor event, really – she stood up from our dining room table and went to get something, and in so doing, banged her shin on her chair leg and suffered a hairline fracture. Though the fracture healed quickly and uneventfully, the trauma of the event caused Miranda’s calf muscle to suffer an FOP flare-up and form a new bit of bone which interferes with her putting her foot flat on the floor. So – was my guilt around the event itself? No, not at all, that was just a fluke event which there was no way to anticipate. Also, we did all we could to prevent a flare-up, administering the appropriate 4 day regime of Prednisone immediately afterward (apparently it wasn’t effective this time around). The guilt part focuses on what happened when, after two weeks, Miranda’s initial full leg cast was removed and replaced with a much smaller ankle stabilizer.

I was the parent who took Miranda for this part of her treatment. The orthopedic surgeon decided that instead of a hard below-the-knee cast, which is the usual treatment for a minor fracture of this sort, Miranda should have an adjustable soft ankle brace, just in case any serious FOP related swelling did occur (at the time, she did have swelling, but we felt it was probably just related to the initial fracture). The idea was that an adjustable brace could be loosened if necessary, while still providing ankle stability and support during healing. Anyway, we were directed to a special store which sells these kinds of items, and a store employee picked out and fitted Miranda with a lace-up number.

Saige broken leg 30-07-2014 8-14-31 PM

Here’s Miranda with her doll, Saige, who sports the typical sort of hard cast usually administered for a lower leg fracture.

Fine. Right? Umm, no. See, the little bootie-brace held Miranda’s foot and ankle in a sort-of relaxed position during healing, and when the FOP flare-up took hold in earnest, Miranda’s foot was forever frozen in that position. So when my girl stands up, her heel can’t touch the floor unless she puts her leg well out in front of her. If standing with her legs together, Miranda has to stand on the ball of her left foot. She also has to walk with weight on the ball of the foot.

Honestly, we were flummoxed to learn about this result – which we discovered when Miranda was cleared for weight-bearing about 4 weeks post-injury. At first, I didn’t understand how it had happened. But, as these things go, I mulled over the details and reviewed it and gradually reached the conclusion that if Miranda’s foot had been held at a 90 degree angle while using the ankle brace, it probably would have fused in a more functional position. And further, if I had been on top of things, I could have ensured that the brace fit to hold Miranda’s foot the right way. I was there.

Ankle brace 11-06-2014 6-22-20 PM

See? Foot was at more like 120 degrees rather than 90 degrees, which would have been optimal.

Did I feel guilty? You bet I did. I felt really, really bad about this. Why didn’t the angle of the foot occur to me? WHY? And to make matters worse, around this time, one of the medical/rehab people whom we met with in connection with this issue instantly zeroed in on the foot angle issue, and asked me point blank why M’s foot hadn’t been held the right way during healing. Oh, god. That person’s penetrating gaze and accusatory expression was horrible. I was a worm.

I felt really rotten about this for a few days. But, then I finally decided to reveal my guilt to my husband. Pete looked at me like I was daft, and said, “But Karen, how on earth were you supposed to know that would happen? You’ve never been through this kind of thing before. It’s totally unreasonable for you to take this on as your fault. I wouldn’t have done anything different myself.” Right then and there, he put the issue to bed as far as he was concerned and refused to assign me a single iota of blame. Then, an extended family member said something similar when I discussed it again a few days later.

And so, as the days went by, I thought about this some more. I ultimately concluded as follows:

1. Yes, I could have changed the outcome of this flare-up.

2. My family members are right. Despite the above, it’s unfair of me to blame myself, because I had no experience with lower leg FOP issues and am not knowledgeable about foot and ankle physiology. Additionally, I had been lulled by a sense of security (false, as it turns out) that flare-ups often don’t occur in connection with bone fractures. In short, given all of this, it wasn’t reasonable for me to have predicted the outcome of Miranda’s left foot restriction.

I think I’ve come to accept this pretty well. I’m not walking around blaming myself for it any more. Except in the odd dark moment…

PS – If you still want to contribute to our 2014 summer FOP fundraiser but just haven’t gotten around to it, there’s still time… To donate on-line, go to Or, reply to this post with a comment and I’ll contact you privately with my address where you can send a cheque made out to: Canadian FOP Network. Thanks.



2 Responses to “Guilt”

  1. Blair says:

    I can only imagine how your emotions wreak havoc in these situations but I have to side with everyone e telling you not to blame yourself. As Pete said, you have never been through this before, and as you said, we’re all human. You are doing everything you can the right way. Forget guilt, it helps nothing. Easier said than done of course. Hang in there.

  2. Steph says:

    You can’t feel bad about that at all. Our daughter was recently diagnosed with FOP (11 years old) and she has walked on the ball of her right foot for approx 2 years. We had it looked at… and she was going to have surgery this year to lengthen her achilles tendons and shave off some ‘bone fragments’ that were there that they could not figure out why… After her diagnosis the bone fragments made sense and we figure she’d been having flare ups in her feet for quite awhile… She can’t bend her ankles past 110 degrees and she never had any sort of cast.. We think it was from all the years of dancing and stretching so chances are Miranda could have had the resistance without the cast (or even after the hard cast was removed).. We were just lucky our daughter was diagnosed before the surgery took place as you well know what the outcome would have been… Woulda Shoulda Coulda… It’s going to be a dance we do for a long long time but there’s no point in guilt. Thanks for the updates!

Leave a Reply