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Clubfoot Challenges And Victories – A Parent’s Story

by LaurettaCWright
Clubfoot challenges and victories: A parent's Story 12 years On

‘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.

Clubfoot challenges and victories: A parent's Story 12 years On

Luis in the plaster cast stage of treatment

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.

Clubfoot challenges and victories: A parent's Story 12 years On

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 challenges and victories: A parent's Story 12 years On

Luis finishes his boots and bar treatment!

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.

Clubfoot challenges and victories: A parent's Story 12 years On

Luis' feet now – 12 years on.

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.

Clubfoot challenges and victories: A parent's story in dealing with talipes 12 years On

Luis and his little sister, Nadja.

If your child has been affected by clubfoot or lower limb deformities, please feel free to get in touch. I’m more than happy to chat about my experience in more detail and offer advice to others.
You might also like…
A Pin For You Health BoardDid you know 1 in 1,000 babies is born with talipes (clubfoot)? When my son was diagnosed with bilateral talipes (clubfoot) 12 years ago, I was devastated. Here are the challenges and victories we faced.

32 comments

Kyle 2nd July 2018 - 12:10 pm

Wow this is such a great story. I have a fried who was just told there unborn baby would have club feet. I will be sure to pass on this blog to them as your story is such a great inspiration, and has such a positive outcome. Thanks for sharing your story.

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LaurettaCWright 2nd July 2018 - 3:58 pm

Thanks very much Kyle – that’s great to hear you think they’ll find it inspiring.

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Sandy Murray 12th February 2018 - 9:09 am

I have followed his amazing progress since he was born – I think it’s also down to his inspirational Mum and Dad (and younger Sister) who are all positive and enthusiastic and get on with life – that must make a difference – well done Luis xx

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LaurettaCWright 12th February 2018 - 10:12 am

That’s really kind Sandy – thank you so much! X

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Greg 30th January 2018 - 12:13 pm

Congrats Luis on the swim! Great achievement. I also have a club foot, and am constantly grateful that I had access to the Ponseti Method… life could be very different without it. Dealing with a clubfoot definitely can give a kid a bit of toughness that helps in other ways. Nice to read that he’s doing so well, and good on you for searching out the best options for him.

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LaurettaCWright 31st January 2018 - 12:19 pm

That’s amazing Greg – and thanks very much for taking the time to respond to the post. Really pleased to hear the Ponseti Method is also working for you. I’m showing your wonderful website to my son as he also has to do daily exercises for his feet – so it’ll be nice for him to read your story and your advice – thank you!

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Tee Simpson 29th January 2018 - 9:31 pm

This is a lovely post. Brought a tear to my eye

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LaurettaCWright 29th January 2018 - 11:09 pm

Thank you Tee – it’s nice to have moved you, but it’s all very positive.

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Super Busy Mum 23rd January 2018 - 11:35 am

What an amazing post and what a journey you guys have been through!!

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LaurettaCWright 23rd January 2018 - 3:00 pm

A journey that seems to have ended well it appears (so far anyway!)

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Melanie 20th January 2018 - 11:46 am

what an emotional post – Great to raise awareness like this though our own personal experiences x

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LaurettaCWright 20th January 2018 - 3:15 pm

Thanks Melanie – if I’ve educated a few more people on this then it’s fantastic.

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Tanya Brannan 20th January 2018 - 10:50 am

I am literally sitting here with tears running down my face as I read your story. What an amazing boy Luis is, and in fact what a strong family you all are.
We all want what is best for our children, and I bet you spent hours fighting and arguing for the best treatment for him and clearly it has worked.
Thank you for sharing your wonderful family’s story, Oh and congratulations on completing that massive swim, Luis!

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LaurettaCWright 20th January 2018 - 3:14 pm

Thank you Tanya – what a lovely comment to read too. When I look back now it makes me wonder how we coped so well, but being informed and having a great support network are crucial to getting through the unexpected. Had I been doing it alone I don’t know how I would have coped. Thank you for your lovely words and positivity – you’ve made my day X

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Nayna Kanabar 19th January 2018 - 9:33 pm

What a beautiful outcome, you persevered didn’t give up and with lots of love , support and determination came through with great success.

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LaurettaCWright 20th January 2018 - 8:23 am

Thanks Nayna! I think we were lucky in a lot of ways. Things could have been worse.

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Emma Raphael 19th January 2018 - 1:55 pm

I really hope that the sonographer went on to lose her job through her appalling bedside manner. My eldest is the same age as your son, and it’s amazing how far things have come on in that short time. So pleased the treatment is over for your lovely boy, what a fantastic result! 🙂

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LaurettaCWright 19th January 2018 - 6:50 pm

Thank you Emma . You’re right of course – she shouldn’t be the one to deliver news like that – and I wish I had complained at the time, but I think we were just so shocked at the news that we didn’t think to. Is your son 12 going on 18 like mine too?! 😉

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Lynne Harper 19th January 2018 - 10:34 am

What a beautiful snippet of your son’s life. I’m so glad he is up and about now and all is looking good. It must have been tough at the start for all of you. He is gorgeous 🙂

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LaurettaCWright 19th January 2018 - 12:33 pm

Thank you Lynne. I just wish I knew back then what I know now.

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Rhian Westbury 19th January 2018 - 10:07 am

That is great news that his walking is good, it’s amazing what doctors can do now but I can’t believe how matter of fact they were when you were first told x

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LaurettaCWright 19th January 2018 - 12:33 pm

I know! What a way to treat people who are so excited about the birth of their first child – terrible!

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Laura Dove 18th January 2018 - 10:10 pm

Oh goodness what a journey! It must have been awful., Im so glad that he is fine now. My daughters feet turned in when she was born but over time with physio they rectified. xx

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LaurettaCWright 19th January 2018 - 12:34 pm

Gosh that’s interesting Laura – I’m glad them managed to fix them! These things are more common that we think!

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Sarah Bailey 18th January 2018 - 7:36 pm

Oh wow I bet it was such a hard time for you seeing your baby have to go through all that. However it is wonderful it has helped him turn into such a strong youngman.
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LaurettaCWright 19th January 2018 - 12:35 pm

What doesn’t kill us makes us stronger eh?!

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Nichola - Globalmouse 18th January 2018 - 3:15 pm

Oh my goodness, I felt quite emotional reading this, especially seeing your beautiful son giving the thumbs up. What a journey and poor you for the absolutely awful treatment when you were pregnant. I’m so pleased it all worked out for you. What an amazing post.

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LaurettaCWright 19th January 2018 - 12:37 pm

Thank you Nichola – I think if the whole situation had been handled differently from the start, we wouldn’t have gone through so much turmoil. If I can help just one person who is going through the same as I went through, I’ll be a very happy Lauretta!

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Kayleigh 18th January 2018 - 7:40 am

I have learned so much from this post! Good for you for talking about it and I’m glad he is happy and healthy! X

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LaurettaCWright 18th January 2018 - 8:36 am

Thanks Kayleigh!

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Bethany 17th January 2018 - 10:30 pm

Oh my goodness, I just learnt so much reading this story. I am so happy that he is happy, healthy and enjoying life to the fullest. Thank goodness he didn’t need an operation, what a miracle I say.

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LaurettaCWright 18th January 2018 - 8:36 am

Thanks Bethany – and I love the fact that you’ve now learned so much about the condition.

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