‘Your child has congenital talipes equinovarus – bilateral talipes in fact.’
‘Oh! Em….what’s that then?’
‘Clubfoot. Your son has clubfoot. He won’t walk properly and he’ll never be great at sport’.
If hospital management had witnessed the conversation between VIP, myself and the sonographer who delivered this shocking news, they’d have something to say.
In fact, I’m pretty sure she would have been fired on the spot.
Her matter-of-fact delivery, personality devoid of empathy and almost disgusted (and disgusting) tone – with a RBF to match – certainly didn’t ease the burden of discovering our unborn child was deformed.
And yet just 24-hours earlier VIP (my husband) and I had been having the time of our lives on a holiday in San Francisco.
He had even proposed to me while away – and we returned in high spirits, ready to celebrate. But our happiness was short lived; the devastating news that we were given shook me to the core.
How can my unborn child have something wrong with him? We were fit and healthy, I was 29 and I kept myself relatively fit. I didn’t smoke or drink throughout the pregnancy…where did it all go wrong?
I immediately had visions of my son trying to walk in big thick boots for the rest of his life and people pointing or, worse still, laughing and mocking him.
I felt absolutely devastated; a huge black cloud hung over me for weeks and the tears didn’t want to stop.
Am I To Blame For Clubfoot?
And in those weeks, I blamed myself; maybe I had one too many to drink before I knew that I was pregnant? Or maybe I shouldn’t have decorated the nursery and breathed in paint fumes?
I fell down a step once while pregnant too – could that have done it to him? All sorts of thoughts and scenarios ran through my mind.
On doing some research, I discovered that congenital talipes equinovarus (clubfoot) is usually genetic, but there had been no history of it (as much as we could tell) from either side of our families.
Our son, who we named Luis, had bilateral talipes (the medical term for clubfoot), meaning that both his feet were affected.
Some babies are born with unilateral talipes, meaning that only one foot is affected, although I believe it’s more common for babies to have bilateral talipes.
Another scan was scheduled for a week later to see how the pregnancy was developing, but in the immediate days that followed I went into myself, depressed and inconsolable.
It was thanks to my mum and VIP's response to the news that lifted me out of the depression; they researched the condition day and night online, reporting back to me with news that it wasn’t as bad as it sounded and that doctors could work wonders.
Just less than a week after I first heard the news about our son, I felt brave enough to start doing my own research online, despite also feeling petrified of what I would discover.
What Is Clubfoot? (Talipes)
But what I first discovered about clubfoot surprised me. Apparently, around one in 1,000 babies are born with the condition. So why hadn’t I seen it or come across it before?
While researching, I also came across a charity for families with lower limb deformities called STEPS – and it was on this platform that I met other parents going through similar experiences.
Just having others to share worries with and ask questions gave me immense hope. The support I received was wonderful and a huge help at a time of uncertainty.
I also found out that despite the hospital telling me that Luis would have to have numerous operations to fix the clubfoot – and that he would always have gait development issues and pains in his feet – they were wrong.
And who knew that the doctors – the people who you trust implicitly – could not be aware of all the treatment options?
This was back in 2005. Nowadays I’ve heard that the Ponseti method is almost always the treatment of choice.
This is fantastic news because when it’s performed correctly, around 97% of children born with clubfoot never need invasive surgery.
The Ponseti Method of Clubfoot Treatment
From our extensive online research, we found a doctor in the UK called Naomi Davis who had been trained directly under Dr Ignacio Ponseti, the man who had invented a different type treatment for clubfoot called the Ponseti Method.
The manipulative Ponseti Method, although much longer than a quick operation or three, would mean no operations, no pain and no development issues.
We wanted to take the longer, pain-free route for Luis, who had also been born with numerous other ailments including tongue-tie, Hypospadias and leaky tear ducts. The poor little mite…he really was being tested to the hilt.
As Dr Davis was the only person to have been trained directly under Dr Ponseti in the UK at the time, we knew that we had to see her – so we travelled from Kent up to Manchester when Luis was just one week old.
We discovered that Dr Davis had trained a handful of other doctors in the UK using the Ponseti Method. And it just so happened that one of these doctors had a clinic less than ten miles from where we lived.
It seemed like fate; finally….things were starting to look positive for a change.
Dr Davis helped by writing a referral letter so that we could take this to our local council and ask that Luis’ treatment be transferred to the hospital that would offer him the best type of treatment for his condition.
Luckily, they agreed. Although if they hadn’t – I would have kicked up such a fuss that I’m sure they would have agreed just to get me off their case. I was prepared for a fight to get my son the best treatment possible – but fortunately, it never came to that.
The Challenges of Clubfoot
The Ponseti Method involves the gentle manipulation of the feet each week, whereby a plaster cast is applied to the legs (from the groin to toes) following a manipulation of the feet into a more corrected position.
Once the feet are corrected (taking between five and seven weeks) the baby then wears a brace, which is effectively two shoes set at a specific angle and joined by a metal bar running between them.
Initially they wear this brace for 24-hours a day for three months and the time in the brace is gradually reduced until they are just wearing them at night – until they are about four years old.
It was hard to see Luis go through treatment – even though the Ponseti Method is the best (and kindest) treatment for him.
During the plaster cast stage (the first stage), people would stare at him in his pram. They’d look at me too, judging me – probably wondering if I had broken his legs.
I could tell that some of them thought the worst of me by the look of disgust on their faces, as if I had neglected him.
That made me unbelievably sad. They couldn’t have been further from the truth of course, but it was a real eye-opener to be on the receiving end of how people made assumptions about me – and treated Luis and I.
On the flip side, what I really loved was people asking me what had happened to him. It meant that I could educate them and raise awareness of clubfoot.
The boots and bar stage were the worst – more so for Luis himself I imagine as he had to endure them until he was four and a half years old.
I used to lie awake in bed at night listening to him trying to turn in his cot. The bar and braces would eventually make a thud on the side and I knew he’d managed to turn himself.
Sometimes though, they’d get stuck in between the cot slats – and then he’d cry in frustration and I’d cry with him as I'd settle him back down.
‘Hang in there little one’ I’d tell him, knowing that the day would eventually come where he could reduce the time he’d have to wear them.
The Victories of Clubfoot
I suppose the first victory during Luis’ treatment was the fact that he didn’t have to have tenotomy (where a small cut is made on the Achilles tendon to lengthen it), which usually makes it easier to manipulate the feet into the correct position.
Luis’ feet had responded really well to treatment and the consultant didn’t feel that he needed one. Needless to say we felt that a small milestone had been reached.
The next hurdle would possibly prove to be the most challenging for everyone. Luis would have to wear his boots and bar for 24 hours a day for three months, reducing the time in the equipment until he was just wearing them for bed. And this treatment would last until he was around four or five years old.
At first we were given lace up boots for his first. I hated them as it took absolutely ages trying to get his feet into them. He’d struggle and cry, knowing what was coming.
It was heartbreaking having to force his feet into them every single time we had to change his clothes or after we had bathed him.
He screamed and screamed and I would end up crying and tearing my hair out in frustration. I wanted to burn the stupid boots and bar.
I couldn’t bear it; something needed to be done – there had to be a better option. It was time to do more research.
We knew about the Ponseti brace – a similar looking device to the boots and bar that Dr Ponseti had invented. But instead of being a boot, it was a shoe with soft straps that wouldn’t dig in and rubberized soles that were comfortable for the baby.
The straps (rather than lace-ups) also meant that the shoe opened up fully, so they’d be no forcing into a boot to contend with. I just had to get them to try.
As the Ponseti boots were much more expensive and highly sought after, we’d have to prove Luis was struggling with the others. Photographic evidence and detailed accounts of our struggles meant that the council eventually agreed to help fund the cost of them.
The day they arrived was like a revelation; it was a huge turning point for both Luis and ourselves. There were no frustrations, no forcing of limbs and no tears from him – or me!
It was then that the treatment began to get much, much easier and we soon settled into a routine.
It’s amazing how quickly Luis adapted to being strapped into his boots and bar. To be honest though, he knew no different since being born and he just adapted himself to them. He even learnt how to crawl – and eventually walk in the brace.
Clubfoot – 12 Years On
Luis is now 12 years old. He doesn’t walk with a limp and his gait development has been normal. In fact, you wouldn’t know that he had been born with his little feet bent and twisted in.
We’re so proud of Luis; he has come such a long way. The struggles, tears and frustrations were horrible. But out of bad comes good – and I found that it brought VIP and I closer together.
We faced a major stumbling block together and instead of bickering and blaming each other, we drew strength from each other to fight the battle together.
The unconditional love that we had for our son saw us through the worse times and kept us hopeful of a brighter future.
Our family – and in particular, my mum – were fantastic, attending hospital appointments with us throughout the whole process. And even now, as Luis has yearly check ups and physio etc…they help take him for us.
As for Luis, he has grown into a very determined and strong-willed boy – stubborn in fact – and I can see that he loves to lead.
I often think that if Luis had not gone through all the upheaval in his life as a baby, he wouldn’t be as tough as he is now.
It goes without saying that I’m proud of him and all of his achievements. Last summer as I watched him complete a 5,000m swim (the only child from his swimming club to do so), I remembered what one of his doctors once said to me:
“Be prepared that Luis will always have gait development issues, he’ll suffer from feet pain and he’ll most likely walk with a limp. He'll never be great at sports.”
And when I think back, I smile. Luis walks, runs, hops and skips like any other child. He's an excellent swimmer and plays for the school rugby team. He doesn’t get foot pain and he most certainly doesn’t limp.
Were we lucky? Maybe – but maybe not. Faced with a huge shock and told that there was only one option for Luis, we could have easily have agreed to surgery and had a very different outcome. Instead we researched our options day and night in the weeks after learning the news – and our efforts paid off.
I have learned many lessons raising my son with clubfoot, but the two most important ones are:
- Through sorrow and pain there is always hope. Things DO get easier.
- Not everything people tell you (even the professionals) is always true.
Who knows what the future will bring for Luis; he continues to surprise us with his achievements.
Yes, he’s a bit lazy – and would always choose time on the Playstation above doing anything active, but most kids his age are, aren’t they?
As long as he’s happy – and now healthy – that’s all I could wish for.