I Want To Break Free: The Story of A Special Foot

This week we had to say goodbye to an old friend; a constant in our lives. The farewell was hugely anticipated and yet seemed to take us by surprise when it finally arrived. This week has witnessed the end of my daughter's nocturnal partnership with her "boots and bars".

Magic Shoes

For those who don't know, my daughter's rather difficult pregnancy resulted in her having been born with a "unilateral talipes" (to give it its medical title) or a "club foot" (to give it its rather archaic, colloquial term). It meant that, having been deprived of the the luxury of growing room in the womb, when she emerged all pink and shrivelled like a baby mole the sole of her foot was turned up towards her face like a flower seeking out the warmth of the sun. A pretty analogy but not much use to walk on.

We were forearmed on this one as when our 20 week "anomaly scan" had discovered just that the local health service had a plan and within a week of diagnosis they had packaged us off to meet the specialist physiotherapist at the children's hospital. Still grieving the loss of our "normal" child, we were ushered into the treatment room to discuss the next steps (so to speak) only to be abruptly woken from our self pity by the multitude of cupboards entitled "airway equipment", "cystic fibrosis essentials" and "mobility aids". This was by no means a worst case scenario; this issue was both rectifiable and non life threatening. Whilst we were warned that our child was unlikely to compete at an Olympic level or a perform as a professional ballerina she would walk, she would skip, she would run but more than that; she would live.

Totes profesh

So after she came along we trotted off to meet with our foot guru and have our new arrival assessed in person. The foot was no better nor worse than the physio had expected based on the scan and, as discussed antenatally, she would require a series of full length leg casts to slowly manipulate the foot from its turned in position towards a more natural sole- to- the- floor appearance. Now, keeping a full length cast on a wriggly baby is no mean feat (pardon the pun) and there were multiple occasions over the next 12 weeks when we would have to run to the hospital brandishing a cast in one hand and a startled baby under the other; desperately proclaiming that all the efforts would be undone were it not put back on in an instant. When we did eventually make it through the first 3 months and it was finally time for the big reveal we were delighted with the results. She had a matching pair!

However, we were then informed that she would need an operation to remedy her excruciatingly tight achilles tendon before the next stage of treatment could commence. So at the tender age of 12 weeks we presented her for her pre-op assessment having kept her nil by mouth for what felt like an inhumane amount of time for one so small. They too seemed to recognise this and she was put first on the operating list. We were relieved and terrified in equal measure. When invited to accompany her down to the anaesthetic room I could not face it and selflessly let the husband fulfil the role. He eventually reappeared looking haunted. He recanted the tale of how she had been all fighting spirit and then was gone; a limp doll only vaguely recognisable as our precious little girl.

Needless to say, several hours later we were informed that the operation had been a success and her last full length cast had been applied. Two weeks later, our relief at finishing the series of casts was short lived, as she was then strapped into her first set of "boots and bars". This apparatus was initially to be worn 23 hours of the day for a 12 week period before being reduced to 12 hours of the day until she was 5 years of age. 

She did not care for this.

Following her first fitting we decided to go for a family day out taking in the fresh sea air and a pub lunch. Being like any other 4 month old she opted to perform her necessary ablutions in her car seat resulting in every nook and crevice being infiltrated and a full strip and hose down essential and yet nigh on impossible in our current surroundings. My husband gamely took her into the nearest accessible toilets and attempted to liberate her from her new apparatus and rectify the situation. From my seat in the bar I issued apologetic looks to the other customers who were hostage to the ensuing cacophony erupting from the nearby facilities as my daughter let her feelings be known. Husband staggered out, battle weary and downed his (now tepid) coffee. It was home time.

Broken. Just broken. 

Having said that I honestly cannot recall another time when the boots and bars were truly an issue. Our little girl has always been open to reason and whilst she has questioned whether she had to don them yet again, she has always been amenable and understood the long term goal. Our long standing night time routine of bath, teeth, toilet, boots and bars, book and bed has become second nature and even the youngest has taken on the role of clicking the bar into place for his big sister before storytime. For us, it was normal but as the date of completion emerged on the horizon I saw, perhaps for the first time, how desperate she was to rid herself of her nocturnal companions.

The countdown was on.

5 years worth of "boots and bars"

Realistically there was no obvious reason why further time or manipulation would be recommended. She had passed every quarterly check with flying colours. She could run, hop and skip with the best of them. So, against my nature, I was cautiously optimistic where she was terrified. As ever, terrified of failure and of letting others down. She needn't have been. She received a big fat stamp of approval and was released on parole.

A happier child you never did see.

That smile. 

So now we are acclimatising to our new normal. It is taking some time and there are still occasions when we have taken our positions on the couch before realising that there is no apparatus required. In some ways I miss the feeling of having a defined, tangible role in helping her with the physical burdens she has to bear but these feelings are quickly dispelled by the sound of the pitter patter of her (unusually) tiny feet in the morning as she gets herself out of bed for the first time in 5 years. 

The Pregnancy: My Imperfectly Perfect Baby

So, to cut a long story short we did actually have a baby...

It was a miscarriage that never was but a threat that loitered menacingly for the duration of the pregnancy. My lovely, green "low risk" sticker was obliterated by an angry, red "high risk" stamp as further complications ensued: gestational diabetes, gestational thrombocytopaenia (no platelets and therefore an inability to clot) and "measuring small for dates".

At nineteen weeks we had our anomaly scan. This was booked early as, although undiscussed, there was a palpable expectation from the medical team that an abnormality would be discovered. Our previous conversations held in the scan department cloaked us in pessimism and the phrases uttered a mere two months ago rang clear:

"There is no fluid..."

"We usually find that this is not compatible with a viable pregnancy..."

"... normally due to a chromosomal abnormality..." 

And sure enough they found an anomaly.

Our baby had a "unilateral talipes". What this actually means is that one of their feet had developed in such a way that it turned in on its self. Historically the affliction had the rather attractive name of “club foot”. The good news was that it was entirely treatable to the point that the vast majority of those born with it actually go unnoticed. They can expect their feet to be different sizes, their calf muscles to be a little under developed on the affected side and they may need to rethink any aspirations to be a professional footballer or ballet dancer but they will run; they will jump; they will play. It takes five solid years of a parental commitment to physiotherapy but it is fixable.

It wasn't the abnormality that they found which caused the concern but the increasing possibility that there would be something more fundamentally wrong with our baby. Any sort of structural anomaly increases the likelihood that there is some underlying chromosomal irregularity but there was no way to know for sure. This was a worry that we would just need to live with and we did.

When she came she was beautiful, there was no denying that. She was tiny, which was fine, as she cried and fed without any fuss but when they passed her on to my tummy I saw it straight away. It didn’t fill me with dread or panic me to the core. She was here. She was never meant to make it this far and she did. There was little that could take away from that. She was my miracle. The miscarriage that never was. A proper human. With nine fingers and ten toes.

They tell me, with the aid of hindsight, that the attempted miscarriage was probably due to the membranes popping in early pregnancy but she had put her arm through the whole and sealed that cocoon up good and tight (my little dutch girl!). The tight seal around her arm restricted the blood flow and prevented it from developing properly leaving her with a slightly smaller right hand and only four functioning fingers. The lack of fluid meant that her legs and feet did not have the freedom of movement to develop correctly which led to her left sided talipes but there were no other abnormalities to find. She was imperfectly perfect.

The above summary is a beautiful thing to be able to write as it now feels like it has always been that way but the certainty I felt when I cradled her for the first time wavered in those first few weeks. You see, we weren’t told those reassuring explanations to begin with. They had to rule out some pretty nasty things first. We needed genetic testing and this couldn’t happen for another six weeks.

It takes its toll on a marriage that: genetic testing. You think you have found the one; your companion into old age. You agree on the fundamentals and you like most of the things about them (let’s not lie, there is always something). You have been through some pretty tough times together and come out stronger at the other end, but then there is a possibility that you do not match in the most important of ways. There is a possibility that in bringing a child into the world you cannot give it the simplest of things: health. It takes a while to navigate your way around that.

I am not sure we enjoyed her until we knew for certain. I am not saying we wouldn’t have enjoyed her if it had worked out differently but there is something to be said for knowing. Once you know for sure you start to cope. You readjust your expectations and move on.

Looking at her now I sometimes forget how amazing she truly is. She is a bright, chatty, happy three year old who runs, jumps and skips. She draws, uses cutlery and picks things up using both hands almost interchangeably. She has the most amazing team of plastic surgeons who have recreated her hand to make it function like a normal hand (apparently opposable thumbs can be built from other fingers) and if you didn’t know, it would definitely take you a while to notice.

I do sometimes feel sad that she might not enjoy a good manicure or may prefer not to draw attention to her hands by wearing the jewellery that most women enjoy. I do worry about bullying and people saying cruel things or shying away from her touch because her hand doesn’t look like it should. But mostly I feel proud. I feel proud that she was strong enough to get here. I feel proud that she is as amazing as she is turning out to be. I feel proud that even though she may not feel it at times, she is a fighter. I am one proud mother.