Today I am sharing one of the most personal posts I have written for this blog; on a special anniversary for us it felt fitting to reach out to anyone else who has a loved one going through any part of this journey, or to anyone who simply wants to understand more about this condition.
I’ve written this with the full support of my son who was born with bilateral talipes (a limb condition also known as Clubfoot) because we want to raise awareness of this condition and provide support for other families on similar journeys.
I’d love for him to be able to share his experiences directly and help other kids who are born with limb abnormalities so we are writing this together.
What is Clubfoot?
“The medical definition of the condition commonly referred to as Talipes or clubfoot is Congenital Talipes Equinovarus (CTEV). Although sounding complicated, when broken up, it becomes easier to understand.
- Congenital – Present at birth
- Talipes – the foot and ankle
- Equino – foot pointing down
- Varusy – heel turning inwards
The term CTEV is rarely used, it is usually diagnosed as ‘talipes’ but is also commonly referred to as Clubfoot.
It may affect one foot (unilateral) or both feet (bilateral). Often the calf muscle is less developed on the affected side.
Clubfoot can occur when the muscles on the outer side of the leg are weaker than those on the inside of the leg. The tendons on the inside of the leg also become shorter than normal. Tendons are the tough cords that connect muscles to bones. In clubfoot, the bones of the foot are abnormally shaped and the Achilles tendon (the large tendon at the back of the heel) is tight.
In most cases the cause of club foot is unknown, but it occasionally runs in the family. If you have had a child with club foot, you are 20 times more likely to have another child with the condition. Clubfoot affects one baby in every 1000 born in the UK and is twice as common in boys than girls. In around 50% of the cases both feet are affected.
In a very small number of cases clubfoot may be associated with other conditions, so your doctor will examine your baby thoroughly, not simply the feet.”
This information is from the STEPS charity website and is provided as a trusted medical definition of this condition.
For many reasons that will become apparent as you read below, I have always actively reached out to any fellow parents and listened to people with clubfoot to help increase awareness and support for this condition. Everybody’s experiences and conditions are unique to them but there is a lot of common ground that I feel is a good place to start from in reassuring and supporting all involved with the treatment.
As diagnosis and treatment predominantly starts in the UK at prenatal care or at birth it is parents/carers that this post will seem largely aimed at. However, as with all experiences, the voices of those with clubfoot need their individual experiences also to be heard and I will direct you to some blogs etc that discuss these publicly below.
I am not a medical professional and this is just our experience, written to raise awareness and share a load.
Diagnosis & The Newborn Days
Our first child was (is) a wriggler, he was never still pretty much from conception and every scan (including a 4D scan at 30 weeks) showed him kicking and bouncing around merrily, happy and healthy, just as we wanted (though a bit less rib kicking would’ve been great pal). I went overdue by 9 days but by the 16th of August 2007 I woke up feeling a craving for a cheese cob which turned out to be code for early labour and off it all started. I had a homebirth with the small matter of a 4th degree tear because he came out arm first like superman (always makes an unorthodox entrance this one) and whilst I was being sorted out (and awaiting an ambulance because 4th degree tears need surgery) my fantastic midwife also informed me that my son had a condition called clubfoot. Under my haze of postbirth euphoria this little detail didn’t really register, I did after all have a screaming bundle of gorgeousness to attend to and a blue light trip to hospital underway. Once I was suitably sutured and on the ward recovering attention moved to us trying to find out more about why his feet looked different. I’d heard of clubfoot, didn’t Byron have it? I knew nothing of what it really was or why it hadn’t been picked up on our scans (this is usually the case but it isn’t something that is checked for routinely, or wasn’t for us). 2007 wasn’t a time for smartphones, not for us anyway, so I had no way of looking it up (ahhh the ease of information 24/7 in your pocket) so relied on my Mum bringing some print outs with her on her visit and awaiting a paediatrician consult on the ward.
Well, our first Dr on the ward ended up being a poorly informed F2 who glumly told us he would have “years of operations” and “be in a lot of pain” to which I think I dropped off the world and cried for hours. The next few visits by medics (literally all of them I think, there were a lot of heads poking around the curtain asking to see his feet because they hadn’t seen a “real” case before) weren’t much better as I considered charging for such educational demos. Thankfully at some point, and in my dazed sleep-deprived (yeah he didn’t sleep either) state I don’t recall all the facts, a consultant came who was much more reassuring; they confirmed information about the condition, that there were treatment options and importantly, not to worry. We were discharged with a physio appointment later in the week for him, which for us ended up being pointless because of the degree of severity, but physio can be successful for many mild (positional) cases.
My son hated his first physio appointment, not one for being undressed and faffed with at the best of times (a sign of things to come), he wasn’t impressed. We didn’t go back because a few days later his paediatric orthopaedic appointment came around and there it was quickly decided that at 3 weeks old he needed to start treatment immediately.
The Ponseti Method
This was introduced to us by the orthopaedic team as the Ponseti method of treatment; in a nutshell, this involves a minimally invasive treatment devised by the brilliant late Dr Ignacio Ponseti, an orthopaedic surgeon from Iowa, and a true legend.
This technique involves a Dr manipulating the affected foot/feet in to an outward and upwards position a bit at a time then applying toe to groin plaster casts to “set” the foot in this position.
This stage of treatment usually occurs with the first few days or weeks of a child being born because the tissues in the feet are more malleable and will usually be done once a week for 4-5 weeks. Because our orthopaedic team at the time were not based full-time in our local hospital we had our casts for 2 weeks at a time (yes, they smelled lovely!).
I want to take a moment to appeal to anyone reading about Clubfoot for the first time to please NOT ever cast judgment when you see a small baby/toddler in plaster casts. Oh I could write a whole other blog post about all the tuts, scowls and nasty comments I received when we went out in public (no easy feat anyway with a newborn but especially one in toe to groin plaster casts). I heard the “OMG look at that baby’s legs” and “how can a baby break both legs?” I presume many thought I’d dropped him or some kind of abuse. The best ones were those brave enough to just ask because at least then I could talk to them about talipes. When I see a baby in these kind of casts I firstly smile at the person with them (because that’s being a decent human being) and then I ask if their child has clubfoot, the recognition you get back is so heartwarming. Because despite the fact that it is quite a common abnormality, the truth is you don’t hear much about it and you see very few children about during treatment. After my experiences I am hardly surprised. Saying it loudly for those at the back; you never know someone’s reality, so just be kind.
Many experiences of the casting stage are that they are pain free for the baby and steps such as warm baths and comforting/feeding your baby through the process help. I am afraid this wasn’t our experience, I may have been a newbie mum but I could tell that the wails of my son and the fact we emerged from each session drenched with sweat and tears and inconsolable for hours meant he was distressed by the whole experience. He hates to this day being held down or touched much and I’m not sure whether one condition just coexisted pretty badly with the other or something more related (i.e. his high sensitivity to touch and other senses just was a negative factor in the process or whether the process was so traumatic for him it caused a stress response), I don’t know. I don’t think many professionals agree on causality for Autism and ADHD or Clubfoot for that matter, what can I say, he likes to be an enigma. It is my opinion that his (at the time undiagnosed ADHD and autistic traits) contributed to his negative reaction to the whole casting process, and therefore for the majority of babies this process would not be as intensely distressing as it was for him. I am cautious of feeding too much negativity in to this post, because it is frightening and worrying, and ultimately we only come from our own experiences so please don’t be alarmed at my honesty; know that given the difficult choice of putting my son through distress to achieve corrected feet with the ability to walk/run rather than be left untreated I would, and did, make that same choice again.
We travelled to Sheffield Children’s Hospital for the final stage of casting which was a tenotomy (a small incision under local anesthetic to release the Achilles tendon at the back of each affected foot, which allows the heel to stretch down fully) and a final cast applied that is left 2-3 weeks for healing to take place. It sounds awful, and I was very stressed by the thought of it, but the staff at Sheffield Children’s Hospital were amazing and actually my son was a superstar and, not for the last time, sailed through it.
This is us after his tenotomy:
Once the final cast was removed we progressed to the next stage which is known as the “Boots and Bar” through the Orthotics department as well as still having regular Orthopaedic assessments.
The boots and bars can be different styles, here is a selection of my son’s Markell boots (made in white leather) below:
Initially, the boots and bar are worn for 23 out of 24 hours a day. So they sleep with them on, crawl with them on, my son learned to climb out of his (high-sided) cot and walk with them on, so don’t fear, they are not necessarily restricted by them (sorry, ha!). Commitment to maintaining the 23 hour rule is so important in determining whether the feet will achieve and maintain correction, without this adherence it is likely that recasting will be required and the process repeated.
Some experiences are that the level of severity, or shape of the foot, means the boots don’t stay on, or they cause blisters. My son initially had blisters and pressure sores but I learned how best to tie the boots on to avoid too much pressure but keep the boot on, and I used to snip the hard edges of the tongue & sides so they didn’t dig in to his leg chub which stopped issues. We used the hour boot-free in evenings from 6-7pm for a bath and then a bit of carpet time for him to kick and roll about.
After 3 months the boot wearing is limited to sleeping, so preferably 12 hours at night and nap times. This continues until they are 4 or 5 years (we stopped at 5) to ensure correction is maintained while they undergo the preschool stages of growth. We became militant about this, every family member knew how to put them on properly, and to his credit my son grew up accepting it as just part of his bedtime routine, as much as putting PJs on and having a story, and never once complained about wearing them.
Successful boot wearing is no guarantee that relapse won’t occur (as we experienced, detailed further along) but it is certainly an important element in long term correction.
Things rolled along nicely for my son, with yearly check ups and thumbs up each time. Although he experienced a lot with his eventual diagnosis of ADHD & autistic traits, his feet didn’t give us any real cause for concern.
Just after he turned 7 we went for his yearly check up. We had noticed that his school shoes were wearing at odd angles and that when he walked he was walking on the outside of his foot (supination) on his left side a bit, and that he couldn’t pull his toes up towards him (dorsiflexion) very well, but it was still a blow when his consultant said he suspected he was in the early stages of relapse. A few months passed where we were given physio to try and stretch the calf muscles and supporting ligaments of the foot, but by the Spring it was obvious that the relapse was progressing and we agreed with his consultant that surgery was his best option at ensuring a successful outcome before further damage was done to his feet.
On the 17th September 2015, aged 8 and 1 month, he had surgery called Anterior Tibial Tendon Transfer (ATTT) on both of his feet. This involved making several incisions along the tibial tendon area which runs along the inside of the foot and transferring it through a bone to the opposite side of the foot to help maintain correction. This transferred tendon is held in place by an incision on the underside of the foot by a large stitch known as a “button” until everything heals. Because of the nature of the operation, and to allow the tendon to knit in place, post surgery my son was instructed to be non weight-bearing for 4 weeks so used a wheelchair and various mobility aids.
He could then only start to bear weight on new “walking casts” with a plastic boot fitted on like a shoe when he was walking. This took a lot of getting used to, and physio, and he walked very stiffly on them so still required his wheelchair. He was off school during this time because of pain management (there were regular cramps- which a frozen gel pack wrapped in a towel placed on the site of pain over the cast helped with- and the surgical button caused pressure sores on each foot- which painkillers and bio oil helped heal) and his school were unable to meet his assistance requirements until he was able to weight-bear confidently. Individual schools will have different strategies and assistance available in these circumstances so it is important to liaise with them as soon as possible about post-operative options and what can be accommodated.
There were highs and lows to this stage, but I am immeasurably proud of how well he got on with it all. Five days after surgery he was wheeling himself about our local shopping village. Seven weeks after surgery he was plaster cast free and in his very cool comic-patterned AFO (ankle foot orthoses) splints, and back at school. Three months after surgery all of his mobility aids were collected. Four months after surgery he was mostly walking without the need for his splints. Six months after surgery he did a sponsored mile run at school for Sports Relief. Eleven months after surgery he was discharged from physio and back to yearly check ups with his orthopaedic surgeon.
This time around in casts in public he was old enough to get the “oh what have you been up to?” kind of questions, to which we used to joke back he was a stunt double filming Spider-Man! There were still gawpers, seriously who does that, but we both have a thick skin now, and anyways I found a subtle middle finger up at them above his head whilst he was in his wheelchair quite an effective reply!
Long-term prognosis and experience
He is now 11 and as I publish this exactly 3 years post ATTT op.
He had another thumbs up at his recent orthopaedic check up and is active, happy and pain free as he starts secondary school. New people that meet him and he discloses his history to are mostly surprised to know he has been through what he has because apart from a few silvery faint scars on his ankle and foot you can’t tell. But his feet are not anatomically “normal”, he will always have talipes, and we try and ensure he has “good” footwear that especially supports his ankles. He has tightness in his hamstrings regularly, he is taking up biking to strengthen his calf muscles which are thinner and shorter than average, and his feet may be always on the small side. He will continue to be monitored until he reaches adulthood and has stopped growing, because the risk of relapse is always there though significantly reduced now he has had the ATTT surgery. But he is one of millions of people treated successfully by the Ponseti method and in a way that, we hope, continues to maximise the function and health of his feet throughout his life.
I am so grateful to the NHS for the outstanding treatment and support he continues to get at no cost. There are many charities, some listed below, that are working hard at ensuring these methods are available and affordable throughout the world to children who’s lives are drastically changed by treatment.
Support links and shortcuts:
STEPS Charity – full of information on this condition, treatments and support. They really are a wonderful charity who we had a lot of guidance from. The leaflet here is very similar to the one we were given and it gave so much reassurance in those early days.
Tony Spineto – an endurance athlete that blogs about his experiences of clubfoot and sports.
@laurasugar1 British Paralympian born with Clubfoot.
Follow the hashtag #korbensspecialfeet to see a snapshot of my son’s journey on Instagram.