The day our world turned upside down...

On 17th September, Jonas broke his leg. We were driving around and the kids were getting a bit too agitated in the back. We saw a playpark on the side of the road and decided to stop to let them run free, before heading home. Unfortunately, they didn't make it to the slide. The entrance to the playpark was nothing else but a cattle grid!

(My husband's foot... A toddler's foot
had absolutely no chance)

I let the kids out of the car just a few meters away from the entrance of the park and told them to go for it, whilst I got a coat from the boot. From where I stood, the grid was invisible, I heard screaming, turned around and saw him on his back. At first, I didn't even realised he was trapped. I rushed to him and got him out of the grid, hoping that he'd just got a big scared and was too tired to calm down.

Obviously, that would have been too easy and we ended up in A&E. An X-ray showed that he'd fractured both his left tibia and fibula, right below the knee. It felt like being punched in the stomach. What else could go wrong?

I was told he'd need to be casted for 6 weeks. I explained to the A&E team that he had been born with left clubfoot and would need to be cast accordingly, with his foot in abduction and dorsiflexion if possible. 

They got a nurse to quickly put a back-slab on his leg and she casted his foot in supination and plantarflexion... pretty much the opposite of what I'd carefully specified. I ended up emailing our consultant for help at 10.30 pm on a Sunday night and was lucky to get a reply back within an hour. She'd sent me her secretary's phone number and requested a call first thing on Monday morning to set up an appointment. We came out with a brand new red cast.

 

Jonas was in cast for 4.5 weeks. He learned to crawl again and I got a pretty good arm workout everyday 😅 He also found out after a few weeks that he could walk on it just like he would on his brace and would just start dancing at any occasion.

When the cast came off though, another X-ray was taken, which showed that the fracture was still healing. Our consultant decided not to recast, but told us to be careful and that Jonas wouldn't be weightbearing straight away. I asked whether or not he could go back into bracing and was told "I don't see why not."

It took Jonas about 8 days to pull himself up to a standing position and 2 more days for him to start walking on his own. 

Worryingly, he had lost a lot of muscle mass whilst in the cast, and his gait had been affected, he would collapse his knee inwards to an awkward position when walking. He'd also lost flexibility in his ankle and I was too scared to stretch, in case his bones weren't fully healed and I hurt him. I've learned a lot about clubfoot, but knew absolutely nothing about broken bones which left me very uncertain.

We met our ortho again early November to check on his fracture. She didn't ask for an X-ray this time and a consultant from another hospital attended our appointment. Watching him walk, the visiting consultant said it was to be expected, that after such a serious fracture, 30-40% children have the same issue which usually resolves within a few months. Our consultant first said that obviously his gait would be affected and he would need a few months to get back to walking normally, before starting to blame it on the DTKAFO. Suddenly, I was told that Jonas shouldn't be in an over-the-knee brace after such a fracture, that it applied too much force on the repairing bone and that "that guy in the US" should know better than letting him use it without adjustment. I was in total shock.

I spent the whole appointment listening to both consultants talk over my head. When I tried to talk, I was told: "You probably have loads to say, but... really... We're just observing." I had tried to tape Jonas's knee a few days before the appointment. The answer to that was: "Your approach to healthcare bemuses me!" (which REALLY didn't sound like a compliment...)

All in all, the appointment went from bad to worse and I left totally deflated and angry for the way I'd been talked to. 

All I care about is for my son to receive the best care possible!!! I've made my choice when it comes to his clubfoot and have never looked back. I was hoping that we'd finally reached some kind of compromise at our August check-up. That day, she told me that her main problem with it was that it "keeps his knee bent at all times". What better way to prove her wrong than to get Jonas to stand tall in it? She had looked at me put the brace on him and watched him walk with it on, then thanked me for the demonstration. I thought she was finally interested and had kind of made peace with the fact that we were getting good results with it. I didn't expect her to recommend it, but was at least hoping that she was finally observing it with an open mind. 

Well, in November, as she was talking over my head to the other consultant, she actually said: "The problem is how the brace keeps the knee bent, I mean, the mum says it doesn't, but, you know..." There and then, I felt I'd heard enough.

As a parent, we put so much trust in our doctors and their teams. And, to be honest, it's only fair! They've studied for years to get to where they are, they know their stuff and I wouldn't question our ortho's skills. I know that, when it comes to clubfoot, she is the best in the country, one of the best in Europe, etc. However, she doesn't know my son. She doesn't know our family, and she doesn't know how hard it has been for me to deviate from her recommendation to use the boots and bar.

When it comes to clubfoot treatment, I've come to realise that once correction has been achieved, bracing is up to us, parents. We are in charge of compliance, we are in charge of ensuring that our children will accept them as part of their life. We learn the shape, the texture and the feel of every inch of their feet, we know every little crease in their skin, we know the feel of their leg muscles and we do everything we can to maintain their feet's correction to the best of our ability. 

We'll read hundreds of medical articles or websites, if need be, watch a thousand YouTube videos, if we think they may help. We'll throw a bottle in the FB sea, if anything suddenly feels odd, and we'll turn to professionals to confirm or alleviate our fears.

A 10-minute appointment every 6 months isn't enough to see how clubfoot treatment affects our children's lives, it's not enough to assess our commitment to them, nor our determination to learn everything we can about talipes in hopes that our knowledge will have a positive impact on their lives.

I respect our ortho and am ever so thankful for her work and for giving Jonas such a smooth start in life, I just wish she would respect me for doing my job too. A job I wouldn't swap for the world.