She moves in her own way; A Toe Walker story

As a parent, it’s very difficult to explain how, when or why, but there is an innate instinct that kicks in, right in your gut, when you know something isn’t quite right.

It was just after her seventh birthday, on our return to school following the two week Easter holidays, when we noticed that Tigs’ shiny patent black school shoes were bent out of shape and fixed into an unwearable position.

It was the first memorable point in time that we had even noticed any sign of her walking on her tip toes, and she had certainly never shown this behaviour before in her infant years. All milestones were hit and she had always been active, running around with her friends.

Initially, we encouraged her to walk properly, told her to stop and grew frustrated. It soon became clear, this was a habit that wasn’t going away and the initial frustration turned into worry.

We sought advice from our GP who told us to keep an eye on things, which we of course did, avidly.

It was obvious to us that this wasn’t a habit that was a passing phase. Month on month we watched the degree of elevation increase, and her discomfort with it. People told us that their daughter, grandchild, friends child did this all the time, but this did not seem the same to us. It wasn’t intermittent – it was constant.

Shoes started to become an issue; pinching creases, rubbing wellies, or stepping clean out of shoes. One pair of soft boots became the go to, and a fabric trainer soon became the only option for school.

Walks became a problem – days out to theme parks or autumn walks always ended with her on Dads shoulders – but she was growing fast and this wasn’t a solution going forward.

We returned to the GP; concerned, wanting answers and asking for help – pushing hard for a referral to see a consultant paediatrician. Only six months had passed but things had deteriorated quickly.

We were referred on to a paediatrician at our local hospital, but in the NHS things do not move quickly, and by the time we were seen, her balls of her feet were developing callouses and her bones were becoming crushed by the weight of her growing frame going through one single pressure point.

Thankfully, we were taken seriously and we were referred on to a leading paediatric neurologist in a London hospital; a reassurring but terrifying prospect in equal measures.

As we waited for an appointment, we used private health insurance to seek out a private orthapedic doctor; which we did in the spring of 2020, in the eve of the Covid-19 pandemic.

We were warned that the year ahead would be challenging and access to healthcare would no doubt be impacted – but reassured to be patient and to understand that her situation would be stable and not a critical concern whilst we lived life in lockdown.

It’s ironic, because the one thing that got us through the pandemic lockdowns 1,2 and 3 were our daily family walks. The images shared online showed a scene of perfection, but the reality was tears, pain and lots more carries home on Daddy’s shoulders.

Undoubtedly, the feet had continued to get worse, certainly no better and as she grew, her body was struggling to remain balanced, pain free and mobile.

Through the means of remote video call, we did access our first specialist call via the NHS – having been advised through the private doctor that this would be our best route.

As we watched through a screen, she was challenged, probed and asked to demonstrate her physical abilities. It was clear things were bad, but we had no answers as to the why, or at this stage, the what next.

Our next step was to undertake several tests which were run at the London childrens hospital – bloods, MRI and EMG. All made for a horrendous day for her, and us, but we hoped, a step closer to answers or more importantly, ruling out some of the nightmare scenarios. Degenerative muscular and neurological condiitons that Google introduced us to; conditions we hoped we would not be getting up close and personal with.

But, it was not to be. The tests were all clear, normal and no diagnosis was found. The only final test, a muscle biopsy to be performed under a general anaesethic would be taken whilst Tigs was under; for her double corrective Orthopedic surgery.

The surgery would release the achilees tendon in both ankles which by now had become so tight her feet were locked in position – her heel no longer graced anywhere near the floor and her skin was as smooth and fresh as the day she was born.

In order to release the tightness in her feet, a tendon would be released under the foot also, to allow her crunched up feet to relax back out into a flat position; to allow her to walk again, and to reset the clock.

Surgery was estimated to be in the summer of 2021, and we were working on the basis that any plans would be subject to surgery. None the less we did make some plans – plans that we felt could be viable should the operation date materialise.

Irony dealt us a strong hand – the surgery was booked for the first day of the summer holidays (just a month after we moved house). 6 weeks in casts would span the school holidays, meaning no beach or swimming, but also no missing school, friends or trying to get to class during the initial recovery.

We had no doubts about consenting to the surgery – Tigs life was becoming increasingly impacted, and at nine years of age, we pushed hard for this surgery as we felt it was life changing for her.

That however did not mean it was easy. Pandemic restrictions meant only one parent could attend at any one time, and our location in Kent meant logistically one of us would need to stay home with her sister.

The run up was novel, exciting even and yet despite the decision to elect to self isolate for 10 days as a covid precaution, we were all riding high on the wave of good luck messages, cards and gifts.

And so it was, that on the 22nd July, she had her corrective surgery.

The anxieties rose to the surface as the reality dawned for all of us – and yet the team did their best to make her feel at ease, supporting her every step of the way.

Post surgery, the pain management options were taken to make her as comfortable as possible, and frankly, I don’t think she was really with it for most of the 24 hours that followed.

As the neuralgics wore off we managed her anxiety as much as her pain and with baby steps we progressed from the bed, to the chair, to the commode, the wheelchair and the bathroom over the course of a few days.

Leaving hospital in double casts with a frame and commode was daunting, and we had lined up a wheelchair to get us through the early days and weeks, not really knowing what to expect.

Of course, once home in her own environment, she made tiny steps and huge leaps of progress – shuffling up the stairs on her bum, walking along the corridor on her frame, and with every achievement, making our hearts burst with pride.

I questioned whether we had done the right thing, watching her struggle. It was overwhelming juggling an immobile child, her active sister, work, summer holidays, plans and all the daily activities of family life.

But we got through – six weeks were kind to us as the coolest and cloudiest summer ever passed by. We were the only people in the UK grateful the sun took a sabattical. We got by with playdates and staycations, always the wheelchair on hand and by now, crutches when she could manage shorter distances.

The day before return to school, we headed back to London where the casts were removed and she was fitted with air boots. Naively we had expected this to be a step forwards, but they were huge, bulky and heavy on her feet – to be worn night and day (in bed!). The only positive being they could be removed so she could finally shower, and we got to see her new feet for the very first time. Her beautiful, perfect brand new, flat feet.

She set off to school the first day of term on her air boots looking like Robocop, and again she smashed it – we were overflowing with pride for how she was dealing with it all. We had pre-empted the return to school and worked on a care plan with the staff so that she had an accessible classroom, we had a parking space allocated and the staff all knew how to support her.

After another fortnight we swapped the airboots for moulded (Harry Potter) splints and commenced weight bearing rehab – another first.

Shoes were still tricky – we had no idea what size her post surgery feet were after 8 weeks apart, and in a completely different shape. Plus the splints which insert into shoes required +4 sizes bigger to accommodate. But thanks to a bundle of preloved hand me downs and a next day delivery, we found 2 sets of shoes for with and without splints so she could finally wear everyday footwear again.

It’s probably the right time to mention that her feet and scars blew our minds. The keyhole scars were barely there, and her lovely feet stood firmly on the floor for the first time in years.

We still have a journey ahead in terms of rehabilitation, stretching out those muscles and tendons as she regains strength and stamina, but it’s ultimately been a success. There are still unknowns about relapse, especially as the why remains unanswered. All we have is today and the now, and so far, we are taking the positives rather than worry about something that has not and may not happen.

She has shrunk (around 6cm) but in so many ways she has grown – in resilience, in determination and in maturity. She has shown us bravery and courage that we could only have imagined, and been just incredible.

It’s easy now to ask myself again whether we did the right thing, because after it all, I would consent again in a heartbeat. This summer was undoubtedly dark, but her future is so much brighter for it.

x MMT

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