Our ‘1 in 1000’ baby and his special feet
During pregnancy, Fishponds Club member, Rhian Stevens, discovered that her baby had Clubfoot, a treatable condition where he’d be born with feet that turn in and under. Now a walking, busy one-year-old , he has responded brilliantly to treatment and Rhian hopes their story will bring comfort and reassurance to anyone experiencing the same diagnosis.
Words: Rhian Stevens
Photos: Lucy WillisAt our 20-week scan, my husband and I experienced the pause we all dread.
Although this was our first baby and I had no working knowledge of the usual process, I’d noticed the ultrasound technician going back and forth over the same area a few times. In the dimness of the room and my jetlagged optimism (we’d landed from our Covid-delayed honeymoon to New Zealand at 4:30 that morning), I told myself I was imagining it. The technician’s face gave nothing away. Our baby wriggled and kicked on screen.
The ultrasound technician put the wand away. She turned to us and said, “I think there may be a problem with your baby’s feet.”
My heart had started racing as she had started that very serious sentence, but I hadn’t expected that final word. There was a problem with the baby’s feet?
“I’ll need a consultant to confirm it,” the technician continued, “but it looks like the position of the baby’s feet is incorrect. Have you head of talipes?”
In a very strange coincidence, I had come across this unusual word only days before, on a baby forum. An expectant father had posted asking if anyone had experience of a condition called talipes because their baby had been diagnosed with it at their scan. In the comments below, a handful of people had come back saying they had an older child, or children in their family, who had been diagnosed with talipes and that it was treatable and as they grew older you’d never even know they’d had a problem.
I feel so glad I’d seen that post only a few days before, like it was meant to be. I would have been in such a state of panic if I hadn’t read it.
Treatable. I remembered that, and I remembered the friendly reassurance the internet strangers had shared to the panicked poster.
I was able to take a breath and squeeze my husband’s hand.
“Weirdly,” I told the technician, “I read about it just the other day.”
What is talipes?
So, what is talipes?
I’m going to borrow from the NHS website here so I don’t get anything wrong: “Clubfoot (also called talipes) is where a baby is born with a foot or feet that turn in and under.” Untreated clubfoot can leave some people unable to walk and the positioning of the foot can get worse, so a diagnosis of talipes needs to be taken seriously.
The technician suspected our baby had ‘bilateral talipes’, which means both feet are affected. For some children, talipes is only present in one foot – this is known as unilateral talipes.
The technician gave us a moment alone in the room to process the news while she went to see if there was a consultant available to confirm her suspicions there and then. I looked to my husband, Chris, and asked him how he felt. Also quite jetlagged, he looked tired and worried. He asked me what I had read about the condition already.
“Not much,” I answered. “I just remember people saying it was treatable.”
It was still a lot to process. We all hope to go into the 20-week scan and leave with the all clear. I had been so worried there could be a problem with the baby’s heart or brain or spine that I’d never given much thought to their little feet. Even in that moment when we knew very little of talipes, we comforted ourselves with the fact that the baby’s heart and brain and everything else looked to be developing as expected.
The technician returned and told us that the consultant wasn’t available, but we could come back in a few days’ time to see her. We confirmed the appointment and left with our scan photos, the news of the baby’s potential talipes, and the exciting revelation that we were expecting a baby boy.
Rhian and Milo (second from the right) and some of their Bump & Baby Club friends (Fishponds Club, Bristol)Processing the diagnosis
Of course, in the days between these scans I spent hours reading up on talipes. I read about the treatment process and joined a Facebook group for parents of children with talipes and related conditions. I found some Instagram accounts of parents’ sharing their child’s treatment journey and was reassured by the happy faces.
I also read that there is a very small correlation between a talipes diagnosis and chromosomal disorder. Babies diagnosed with talipes have a 3 – 5% chance of being born with Down Syndrome or another chromosomal disorder. The chance of this felt like a much bigger thing to face down than wonky feet. Any real fears I felt about our son’s diagnosis were in relation to this small percentage, about what our life could look like should he be in that minority.
When we had our additional scan with the consultant and she confirmed the technician’s diagnosis of bilateral talipes, she asked us if we would like to book an amniocentesis to see whether our son had Down Syndrome. Chris and I only needed to look at each other to know that the answer was no - we weren’t comfortable with the risk the test presented even though it was low, and we knew that our little boy would be our little boy, entirely loved, no matter what.
Even though we told a few people about our son’s talipes diagnosis before he was born, we only mentioned the potential for Down Syndrome to a select few. We discussed it ourselves, and what it would mean but we didn’t want anyone else’s worries or concerns to cloud our excitement. I had some fiercely protective moments as I felt our perfect boy kick about in my belly, knowing I’d never let anyone tell him he couldn’t do anything he put his mind to. What would be, would be.
Learning more about talipes
At our additional scan with the consultant, she referred us to the physiotherapy team at the Bristol Royal Hospital for Children. Before our son was born, we were offered the chance to have a video call with one of their specialist team to ask them any questions and learn more about the treatment process.
We’re very lucky that we had moved to Bristol just before I got pregnant. The physiotherapy department at the children’s hospital includes an orthotics team and consultants who have specific talipes training and have been treating children with the condition for years at their regular talipes clinics every Wednesday. Although the NHS treats talipes, not everyone lives so close to a specialist team and many parents seek referrals away from their local hospital to hospitals with a dedicated team.
On our call with the physiotherapist, we learnt a bit more about our son’s diagnosis. Since his feet had been seen on a scan, it was highly likely his condition was ‘fixed’, caused by his Achilles tendon being too short, and not ‘positional’ due to a cramped position in the womb. We learnt that the condition was more common in boys, and present in 1 every 1000 children. The physio told us that although there is a genetic factor at play in some cases, sometimes talipes just happens and it’s not clear why. As we had not been able to turn up any family history of the condition, our baby’s case was considered ‘congenital idiopathic’ – present at birth with no known cause. This helped me assuage any dark thoughts I’d sometimes entertained that something I had done during pregnancy had caused the condition – it just was.
Treating talipes
The physio also talked us through what to expect with our incoming son’s treatment. She talked us through the Ponseti method, the most common and effective technique used to treat talipes around the world.
At 3 weeks old, our baby would have his feet flexed as much as they could towards the correct position before having casts applied to both legs, up to just below his hips, to help his body learn this new position. We would then go back once a week for as many weeks were needed to reposition his feet into a corrected position, flexing them further each time. Once the position looked good - maybe by the time he was 3 months old - he would undergo a minor procedure called a tenotomy in which the Achilles on both feet would be cut before new casts were applied while the wounds healed. The clever human body being what it is, his Achilles would grow back longer, allowing for the much-needed flexibility that would give our son the ability to walk and run.
After this, we would move on to the ‘boots and bar’ phase. For 23 hours a day, he would have to wear specialist boots with a bar between them to hold his feet at a set angle, continuing the work the casts had started. After 3 months of 23-hour wear, he would progress to wearing the boots and bar overnight for 12 to 14 hours. He’d need to do this until he was five.
It sounded daunting, but achievable. I worried he’d be in pain, but the physiotherapist reassured us that he would be so used to it, this would just be what he had always known. The babies she’d worked with over the years had all been just fine, although there could always be some tricky days when a new position was set or the boots were new to them.
I continued to check in on the talipes Facebook group and other talipes resources and saw that what the physio had told us appeared to hold true – babies were adaptable. Some struggled more than others, but the vast majority settled in to their casts and boots well. I picked up a few other tips too – footless sleepsuits would be a must-have item, and we shouldn’t need any specialist buggies or car seats as long as there was reasonable width to fit the boots and bars. I posted to ask for advice about breastfeeding with casts and the boots and bar, and so many kind mums replied with how they had managed and even shared photos and tips on positioning and latching.
The weeks ticked by. We felt as ready as we could to take talipes on.
Becoming parents
11 days late, following a 36-hour labour and emergency C-section, our son was born at a very healthy 9lbs. We called him Milo.
Milo had a shock of dark hair, alert and expressive eyes, and his little feet were adorable.
Following all the usual checks and tests at the hospital, there were no concerns of any additional problems. Bilateral talipes was his only diagnosis. A weight lifted as we finally held him in our arms and were enchanted by every little thing he did. When he was a day old, Milo sneezed directly into Chris’s face and all Chris could say, beaming, was, “His first sneeze!”.
The date of the start of Milo’s talipes treatment arrived through the post when he was only a few days old. I was still figuring out breastfeeding, and the shock of sleepless nights and figuring out how to care for a tiny human was hitting hard.
I found myself grieving the fact that we had to change anything about our gorgeous boy. His feet were so perfect, he was everything he was supposed to be.
But I knew I only thought that because I loved him so much, my tiny baby. We had to go through the treatment so Milo could walk and keep up with his peers. We were lucky that such a treatment had been developed, and that it was available to us for free on the NHS.
So, I made sure we got some mementoes. My auntie helped us get Milo’s feet stamped on a few different plates and tiles to remember the special little curve they had when he was 9 days old. When he was two weeks old, we had a little photoshoot, just me, Chris and Milo, and the lovely photographer helped us get a few special close-ups of his feet.
Treatment begins
At just over three weeks old, we took Milo to the hospital for his first casting. It was a tricky ordeal. Although the team at Bristol have lots of experience, babies aren’t known for their ability to keep still or be reasoned with, and Milo was no exception. I breastfed Milo to try and keep him calm and distracted whilst the casts were applied.
This worked reasonably well on some occasions, but less so on others. Do you know how many people it takes to cast the legs of a tired six-week old? Five, including Mum trying to breastfeed under a big muslin with the baby to stop him getting distracted, and Dad nearly passing out from making white noise with only his breath.
Even though Milo didn’t enjoy the process of having his casts applied, he didn’t mind having them removed and he always enjoyed his brief bath at the hospital, the only chance we had to bathe him between casts. Once the casts were on, even from the first set, he coped so well with them. He could lift both legs just fine and even rolled over from quite a young age. The physio team always commented on how strong he was.
Photos (Middle top row and left bottom row): Georgia Corbett Sharing my worries
I had started to share more with my Bump & Baby Club group about Milo’s diagnosis and his treatment. We had met during some very frosty January and February nights in a room above a pub in Fishponds, seven couples who were all about to go through the same lifechanging thing.
Milo was the last of the babies to arrive. Still trying to figure these little creatures out, us mums started to meet every Friday. At first, we went to each other’s houses, sharing our birth stories as the babies fed and cried and snoozed. As the babies got older and we gained confidence, we ventured out to parks and cafes. Those Fridays meant so much to us all, to be with other women who were going through the same thing at the same time, when your body has already been through so much. There has never been any judgement between us and, in this strangely accelerated friendship where you’ve comforted someone through their weepy new mother anxieties before you even know what they do for a living or where they’re from, I felt able to share some of my concerns that related to Milo’s condition.
I wasn’t worried about how his treatment was going. I had confidence in the team at the children’s hospital, and they were pleased with his progress. However, I was worried about what people thought of me when they saw me carrying my newborn with both of his legs in casts. I was worried that people would think I had done something terrible to him, or been negligent, and that they would say something horrible to me.
My new mum friends – the ‘Mumma Sisters’, as we started to call ourselves - were quick to reassure me that this would never happen.
And it never did. When Milo was in the casting stages of his treatment, I only ever had a few polite enquiries – maybe from a cashier, or another mum at a baby class. Most assumed he was being treated for his hips, as they had seen that in their own families. They were only ever kind when I explained what the casts were actually for.
Milo’s stylish new boots
Milo had his tenotomy at 9 weeks old. It was performed by a consultant, with only numbing cream applied to the backs of his ankles to avoid any of the potential ramifications of local or general anaesthetic. We waited with Milo in a very hot, windowless room in the hospital as the numbing cream set in before taking him to the small room in which the procedure would be performed.
We weren’t allowed to stay in the room with him. Instead, we had to leave Milo and go down the corridor to wait. We were told it could be fifteen minutes.
It was actually only five minutes, but they were five long minutes. My stomach was in a jumble. I kept glancing back down the corridor, waiting to be called back in to my baby.
Milo was red-faced and screaming when we were reunited with him. The upset wasn’t due to pain, but because he had had to be held in place during the procedure to ensure it could be done accurately. He continued to cry hard while his new casts were applied and was only slowly calmed by cuddles, breastmilk, and singing. Just as they were starting on his second cast, exhausted, he fell asleep.
After a long nap, Milo was full of smiles again. It was as if nothing had happened. The tenotomy had gone well, and his wounds healed nicely over the next few weeks.
At 12 weeks old, Milo was fitted for his boots and bar.
Boots is a bit of a funny name really for the kind of shoe most commonly used during Ponseti treatment. Made up of three straps and buckles, with a tongue across the middle, and a solid metal base that the bar can be slotted into, I’ve always thought they look more like a medical Gladiator sandal.
We eased into his 23-hour wear, getting Milo used to the boots alone first and then adding the bar a day or so later. The bar was initially set so his feet pointed outwards at forty degrees, but this was dialled up to sixty degrees once he was settled into them.
Milo was always happy with his boots. Even though they have to be very tight to do their job, he got used to them quickly. The bar restricts movement more, which Milo seemed to find frustrating at first, but he got it after a few days.
The first full day Milo was in his shiny new boots, I went with a Bump and Baby friend to a special Thursday morning comedy gig for parents and their babies. Milo watched the show intently for the first half and appeared completely untroubled, although he missed the headline act, preferring instead to nap against my chest in his baby carrier.
During his hour out of his boots and bar every day, Milo would kick about and we would give him his bath before putting the boots back on for bed. We were even able to make use of this hour to take him swimming for the first time, something I’d really been wanting to do with him.
We had a few check-ups with Milo’s physios during this period of wear and they were very pleased with how he was coping and the continued flexibility in his feet. At five and a half months old, we were able to drop him down to just overnight wear.
Looking back on our journey so far
Getting to overnight wear felt like such a huge milestone. I’d been looking forward to it so much, to being able to properly squish my baby up against me in a cuddle without having to navigate the bar, to seeing Milo with his chunky feet out and waving in the air. I wanted it for him, and I wanted it for me.
Milo has been so amazing through everything. He is so resilient and has responded brilliantly to the treatment. Having made us walk him round and round the house holding his hands since he was seven months old, Milo took his first independent steps about two weeks before his first birthday. That never would have happened without all of the casts and his special boots, without the expertise of the lovely team at the Bristol Royal Hospital for Children.
Five still seems so far away, but Milo’s first year really has flown by. Putting his boots and bar on for bed is getting trickier as Milo gets more mobile, but he remains unbothered by them – if anything, he’s very interested in all of the buckles and straps, studying them to understand how it all works. He gets the occasional pressure sore, which we treat with Sudocrem and adjust his straps around it, but his journey has otherwise been smooth so far.
There is a small chance of relapse with talipes, particularly when growth spurts happen, but we know the signs to look out for. We still have check-ins with Milo’s physio every few months and, as he graduates out of his boots and bar at the age of five, he’ll still see them at least once a year until he’s eighteen.
Milo is such a happy, chatty little boy. He has a cheeky little grin, wicked comic timing, and charms people wherever he goes. He is adored by his grandparents, auntie and uncles, who are always so excited to see him. No matter what happens, his feet aren’t going to stop him going places. I’m so proud of him and the sweet, enthusiastic, busy little person he’s becoming.
I’m proud of Chris and me too. Becoming a parent is one of the toughest, life-upending things you can do, and we didn’t expect to hear what we did at Milo’s 20-week scan. We didn’t think we’d have to figure out a few extra things on top of everything else, but we managed. Everyone has their own little hurdles.
I hope as well that, if you’re reading this because you’ve recently had a similar experience to us and heard the words talipes or clubfoot at your 20-week scan, or you’re early in your pregnancy and curious, that you feel reassured. I remember that strange coincidence of coming across the term talipes at 19 weeks pregnant and only opening the post on the forum because I had no idea what the word meant and felt like it was a good idea to be prepared for any eventuality.
That seemingly random bit of reading was a comfort at a huge moment in my life. I hope, in sharing our story like this, I can offer the same comfort to someone else.
