Year One: A Tale About my Talipes Titan Starting Her Treatment

Hello, this is a blog about my one-year-old daughter, ‘Lula’, and our journey with Talipes.

Knowing what I do now, and having experienced Lula’s Talipes for over a year, I wanted to write about the experience in the hope that it reassures and informs other mums and dads, and indeed grandparents, aunts, uncles, friends… We started the Ponseti treatment 16 months ago and will continue with it for the next four years. I hope to continue sharing our story each year of this journey to help other people who might be going through the same thing. So this is ‘part one’ of our story so far.

Lula has ‘Bilateral Talipes’, also referred to as ‘clubfoot in both feet’. When I first discovered this, I trawled the internet to find out more information about what it would be like day-to-day for her, but also for us as parents. I found some information about the medical side of it, but didn’t find much from a practical perspective. However, I didn’t know then that the most helpful thing was joining the ‘Clubfoot and Talipes UK Group’ on Facebook, and also just to talk about it openly with others because it turns out there are (some) other people out there with kids with the same condition and it was reassuring to know it was treatable.

Finding out Lula had Talipes

So, I will start from the beginning… We found out Lula had Talipes at the 20-week scan when the sonographer told us her right foot was turned inwards. At this stage, it was hard to know whether this was serious or not, and so she referred us to the Foetal Medicine Clinic for further scans. I won’t lie, my husband and I left the room that day thinking ‘sure that’s not so bad, a bit of physio and she’ll be fine’. Then I went for the next scan (I was on my own due to the ongoing Covid restrictions). Reality hit hard that day. The consultant could see that Lula had Talipes in both legs and (based on that scan and two further scans to confirm) that it was quite pronounced i.e., severe.

The staff were so lovely and kind and really took their time to explain everything, including all potential risks etc. One of the potential risks was that Lula could have other serious conditions sometimes associated with Talipes. They explained that I could get an Amniocentesis test (to check if a baby has a chromosomal or health condition by testing a sample of cells from the amniotic fluid – but it comes with a series of risks), or get a blood test from a private clinic (at a considerable cost) and this would ascertain any potential conditions the baby might have, or of course just wait and see.

To say we were worried would be an understatement. We decided we’d go for the blood test from the private clinic ASAP. We got the results a week after the test and it confirmed that she fortunately didn’t have any of the other potential associated conditions. I felt a wave of relief immediately followed by a wave of guilt, realising other parents wouldn’t be getting the same news as me… and then remembered I needed to just focus on learning about, and dealing with, Talipes.

In the early days I found a lot of comfort in the online community that already existed around Talipes. STEPS, the worldwide charity for childhood lower limb conditions, was an excellent source of information. This, along with Facebook Groups, and other parents who have shared their own journeys on social media, were so helpful for me. Each baby is so different and all on their own little journey, so take time to do plenty of research, but be prepared to learn as you go.

The Beginning – Getting the plaster casts

Our lovely Lula, a breech baby, was born in June 2021. I was under the illusion that a consultant experienced in Talipes would see her within 24 hours and assess her, as I had read this online. It was about 5 weeks later before she had her first appointment and we were wrecked with worry that this was extremely late (we live in Northern Ireland and a lot of services here are reduced/delayed in July). During those five weeks, Lula had an ultrasound of her hips which thankfully was all clear (she was born with clicky hips, as well as jaundice and a heart murmur – but within a matter of days she was fine and none of these things resurfaced). When we got her appointment to go to the Talipes Clinic, we both went in with her to her first appointment, but of course due to Covid restrictions only I was allowed in with her to see the consultant. She was assessed as being a severe case, and whilst I thought one foot was worse than the other, the consultant confirmed they were both equally bad. Her treatment plan would be: (a) plaster casting (5-6 weeks), (b) followed by potential surgeries, (c) followed by 23 hour Boots and Bar wear (12 weeks), (d) followed by 12 hour Boots and Bar wear (five years).

Right then and there they put both her legs into plaster casts. If you are a parent going through this, I would strongly recommend to mentally prepare yourself in advance. It’s not a negative experience (in fact I was delighted she was finally being seen), it’s just not a ‘normal’ experience either. Based on our experience, below is my summary of ‘things that might be helpful to know before your first plaster casting…’.

You may need to help by holding your baby down (I’m assuming some babies are fine with this, Lula was fine some days and then not so fine other days). Your baby will be crying with discomfort when they try and manipulate/manoeuvre the foot at an angle for casting (you can see from the two pictures below that they really ‘manoeuvre’ the feet; worrying aside for the parent and discomfort aside for the baby, it is actually incredible what the team can achieve in such a short space of time with casting). It will be your job to soothe your baby so they don’t get overly distressed during this activity (if your baby uses a dummy then definitely don’t forget to bring it that day). You will also need to bring a spare nappy (your baby most likely will be naked while the team apply the casts) and potentially spare clothing if they get plaster on them - the plaster cast gets everywhere, and I mean everywhere, so definitely bring lots of wet wipes to wash your baby down. Also you will want to bring a towel (the plaster will get all over the buggy, the car seat and you), and you will want to bring a bottle of milk, if your baby isn’t breastfed. Also prepare yourself for seeing the plaster casts being sawn off your tiny baby’s legs each week, and holding your baby down during that too (I’m aware from the Facebook Group that not every hospital offers this and some parents take the casts off at home in the bath). Any questions you have, these appointments are the key opportunity to ask them while the team is around. Prepare yourself for sitting in the waiting room too – hearing the saw and babies crying is like a torture chamber – but just know they’re all 100% ok and lucky to be getting the best treatment and care – it’s the parents who are a wreck! One tip before you go into the hospital or right before the casts go on, weigh your baby and take their measurements – when the Health Visitor calls to your house to do this in the upcoming weeks they won’t be able to get accurate measurements because of the heavy casts.

Adapting to home life with casts

The other thing to mentally prepare yourself for is when you get home with the baby – not all babies are the same, but Lula screamed and cried for 24 hours after every casting. It was brutal for all of us. I remember spending entire Tuesday nights pacing around the sitting room with her, our poor dog was so distressed listening to her cry she wouldn’t stay in the same room. I mentioned how distressed Lula was after every casting session (and indeed the rest of the week) with the team and they said it can be because the casts can get quite hot. However, after five weeks of casting I realised myself that she was having almost colic-like symptoms, really struggling with wind as she was unable to move with the weight of the full-length heavy leg casts. She was also being given ‘sugar water’, a type of syrup, when the casting was being done, as this makes babies suck harder on their dummies and therefore is a distraction from the pain (newborn babies aren’t allowed pain relief until three months old). However, I asked if she could not be given any sugar water as I was certain it was making her stomach and cramping worse, and the poor thing had diarrhoea after each casting session too. An additional factor which may have made Lula’s experience worse was the fact this was Northern Ireland’s hottest summer ever recorded. So the consultant advised we just keep clothes off her completely as the plaster casts alone would cause her to be warm. So we just had to make sure she was kept well hydrated with small bits of cool boiled water, as well as cool milk, and at night she often slept with nothing over her or with just a large light muslin cloth – although she couldn’t sleep much so it didn’t really matter!

On a day-to-day level the challenge will be to keep those plaster casts clean – an impossible task with a newborn! You will be panicking each time there is a poo nappy how you’re going to avoid the nappy touching the casts (the casts go right up to the top of their thighs). Just don’t worry – a wet wipe will fix it, the casts get replaced every week, and the Talipes teams in the hospital have seen it all! You will notice the baby is so much heavier to carry around now, and you will have to adjust how you carry the baby so their legs and hips are supported, but you will do this naturally without thinking. It’s possible to still use certain baby harnesses/carriers but I was always worried ‘is she really all that comfortable?’, so I would never have her in the carrier for more than a few minutes (I was probably worrying unnecessarily). Also other people might be a bit nervous to hold your baby, which is understandable, so don’t let it get to you, just show them how or just leave it.

Additionally, you cannot bathe them or have water near the casts in case they crack, but there is nothing you can do about that. So it is just a matter of using wet wipes a lot, and I used to lean Lula over the sink in the bathroom and just give her hair a light wash. The hospital also advises to keep an eye that her toes don’t turn blue/purple (a sign of no circulation) or that the casts have slipped (taking a photo of the casts as soon as you leave the hospital helps to know whether there has been slippage or not as you have something to compare against) – if this happens they will give you a number to phone, or if its urgent you can use water to take the casts off yourself. Thankfully this never happened in Lula’s case.

The Middle – 23 Hour Boots and Bar

After six weeks, the consultant reviewed Lula and made the decision that she had sufficient flexibility in her feet to avoid the tenotomy i.e. surgery. We were overjoyed. So she had her final casts taken off and she went straight into her Boots and Bar that day. I didn’t know I needed to bring cotton knee length socks – the team supplied cotton slip on material until I got home, so definitely just always bring a pair of spare socks with you to those appointments in case you ever need them! They also taught me that day how to put the Boots and Bar on – pay close attention to that as it’s not overly easy at that early stage. Lula’s feet weren’t like normal feet after weeks in plaster cast – just a bit bulbous due to fluid and casting. Also babies with Talipes have oddly shaped toes and toe nails, which I didn’t know at the time but it’s completely normal (the Boots and Bar should correct all of this so don’t worry – cutting her unusually shaped toenails was a challenge to begin with but now it’s a cinch).

I was nervous going home with her in the Boots and Bar, more so than when she was in plaster casts because at least I didn’t need to do anything. Now, I would be responsible for taking her Boots and Bar off after 23 hours each day and then putting them back on again correctly. I needn’t have worried. Once you do the Boots and Bar a few times you learn quickly what technique works for you. I tended to sit Lula on my lap facing outwards – other parents find it easier if they’re lying down facing you for example. The trick is to just make sure the middle strap is on correctly and tightly, the other straps are easier to close following that one. Her boots go on with the buckles facing inwards (to reduce them getting caught on anything). And the Bar is fine, it goes on last and just clicks into place. Just always make sure that their heel is fully visible through the ‘window’ of the Boot, this is a circular hole in the Boots that allows you to check the heel is properly in place at a right angle (see pic below) – this can be a little tricky especially when their feet are so small, but it gets a lot easier when their feet are longer and a better shape).

I bought a soft cushioned cover on Etsy for the Bar, because if Lula was sitting on my knee flinging her legs up and down then the metal bar would come crashing against my knees or shins – which hurts a lot! At the beginning, Lula couldn’t lift the weight of the Boots and Bar at all, but after a couple of months she adjusted and I suppose her leg muscles got stronger and then she was able to swing her legs about and she was much happier. Similarly for parents, you get used to the additional weight of your baby in the Boots and Bar quite quickly.

Another challenge is making sure they don’t get cuts or sores on their feet. It’s not the easiest thing to avoid, but if it happens don’t panic. I found Duoderm plasters to be excellent. The hospital gave me some and then when I ran out I was able to ask the pharmacist in Boots (the plasters were less than £1 each). If I thought Lula was on the verge of getting a sore, I would put the Duoderm plaster on in advance to avoid it getting any worse. On one occasion, I think maybe the strap nipped her foot slightly and it looked like it had the potential to get worse, so I left the Boots and Bar off that night – first time ever and I felt wracked with guilt – but it was worth it as it cleared up quickly. I figured it was better to do that than make it worse and then she’d have the Boots and Bar off for up to fortnight if it had festered into a blister or worse. I mentioned needing to use the Duoderm plasters quite a bit during one hospital check-up appointment, and the consultant gave me a ‘pringle’ to use. This is a white soft rubber addition to the middle strap that eases the pressure directly on the foot – and the second we got it the issue seemed to stop, so it is worthwhile getting one if you can. When Lula got Chickenpox, I was really worried about it spreading to her feet. Fortunately, it never did and she didn’t miss a night in her Boots and Bar during that time, she was a little trooper.

I found night times really tough while she was in the Boots and Bar for 23 hours a day. She really struggled to get comfortable and just couldn’t sleep for longer than 30-45 minutes at a time. She also struggled with wind, and I assume it’s because she couldn’t move much with the weight of the metal bar on her legs. So I’d be lying if I said it wasn’t tough at times. However, it’s important to know (a) that not every baby has that experience and (b) that it only lasted during those few months while she was in 23 hour wear.

Lula loved having her one hour of freedom from the Boots and Bar each day. This is when we’d bathe her and I’d do ‘bicycles’ with her legs to see if it would help with tummy problems. She never complained when I put the Boots and Bar back on, but maybe she was too young to understand then.

Lastly, keep an eye on the Bar, a couple of times I noticed the screws had loosened and needed to be tightened/screwed back in – certainly not a big or common problem, but just always check that all is as it should be each night.

The ’End’ – 12 Hour Boots and Bar

By no means is moving to the 12 Hour Boots and Bar stage ‘the end’, it’s merely the beginning of the final (longest) stage! Once we got moving onto 12 hour wear, it all changed – and our ‘wee sunshine baby’ appeared – she smiles and laughs non-stop now, she’s just such a happy wee thing.

She also has great leg strength, can stand up while wearing her Boots and Bar in the cot at night (usually while laughing her head off), and she has just started walking now too at 16 months – she is doing brilliantly and she’s beyond delighted with herself. It’s a really lovely feeling getting to move to the 12 hour wear because your little one can do all the ‘normal’ activities by day. So at tea time every day I put her Boots and Bar on at 6pm when she’s getting ready for bed and she keeps them on until she wakes up between 6-7am. It’s just normal for us now and I hope Lula continues to keep up this routine without any hassle; after all we have another four years of this treatment to go. Lately, while putting on her Boots and Bar, I’ve noticed she doesn’t want to sit still – so I am busy trying to distract her by pointing to pictures on the wall. So far that distraction technique seems to be working but I’m sure I’ll need to find a new trick again in a few months’ time.

One thing to remember (and please learn from my mistakes) is that when you have your consultant appointments every 3-4 months during the 12 hour stage of Boots and Bar, remember to bring the actual Boots and Bar! This seems beyond obvious; however, when your child is out of the Boots and Bar by day and you’re balancing work, childcare and hospital appointments it’s possible you might forget to bring them. Each time you go to the appointment, your child’s feet will be measured to see if they need the next size up in Boots, and if the Bar needs to be lengthened (they measure the length each time against the width of the baby’s shoulders to see how far apart the baby’s feet need to be). In the hospital we go to, they donate the used Boots and Bars to a children’s Talipes charity in Africa. So definitely remember to bring them with you!

What you need to know – practicalities

Aside from everything I have already outlined above, the following additional tips below may be helpful for you if your baby has Talipes:

• Don’t buy a narrow pram/buggy - Because Lula was our second child we already had a pram which we couldn’t use because of how narrow it was towards the bottom, and that shape just doesn’t work when they’re in Boots and Bar, as their feet are obviously kept far apart but also facing outwards (to stretch the tendons). Luckily, we had a buggy which worked fine (it was a secondhand Silver Cross and the same for the car seat).

• Cushion under baby’s knees for comfort - Lula was never comfortable in the car while in her Boots and Bar, but I suppose for obvious reasons she was just uncomfortable generally. Some parents say, whether it’s in the house or cot or car etc, to place a cushion or towel under the baby’s knees for additional support. I personally never found this worked for Lula, but others have found it helpful so it might be worth trying that too.

• Travel cot - We also couldn’t use the Moses Basket we already had, as it was too narrow for the width of the Boots and Bar. So I ended up getting her a travel cot. This has been a god-send because there are no concerns about her getting her feet stuck in the spokes, nor making a racket banging the Boots and Bar against the wooden cot sides. I just bought an additional mattress for it to make it comfier (and the one we got, Joie, had the option to have it raised for a small baby or lowered for an older baby).

• Sleeping bags - I also started using sleeping bags for Lula too once the summer was over, so it was a challenge to find sleeping bags which were wide at the bottom to comfortably fit the width of the Boots and Bar. I usually bought ones that said ‘wide’ on Amazon and I always bought the next size up, or two sizes up, as I find they shrink ever so slightly with washing and drying and she needs the extra room.

• Clothes - In relation to clothing, while she was in plaster casts and it was a hot summer she really just wore either nothing, vests, or button up tshirts and long sleeved tops. There was no need to put anything over her legs. On the very odd occasion I put a skirt on her! When she was in 12 hour Boots and Bar wear, she could obviously wear anything at all during the day, and then at night she just needed button up footless onesies. These aren’t the easiest things to come by. Next have some, as do Aldi, and lots of places online too – you’ll just have to look. I ended up cutting the legs/feet off her older sister’s onesies, it seemed like a waste to throw them out and they work just fine (I’d like to say that I sewed the hems on every single one but I didn’t – and they’re grand!). But the Facebook Group has such a good system in that parents swap clothing with each other for free and you only pay for postage – I love that. So definitely don’t rush out to buy things or put yourself to any great expense, it’s just footless onesies and socks that are needed – and everything else will be fine.

• Cotton socks - The other thing you will need in large supply is cotton socks. I found ones with little rubber grips on the soles to be best to stop her feet from slipping in the Boots and Bar. I got these socks in F&F in Tesco and also they’re in Primark, Dunnes, Next and other places too. But again parents on the Facebook Group will keep you right on this topic too – no need to be buying anything expensive. I have found that Lula’s feet are quite small, so although she is a big baby and I needed to buy clothes that were one size up, I was always buying socks that were a smaller size. I have not bought her (proper) shoes yet, but I will need to do that soon as she is walking everywhere! As far as I’m aware, babies with Talipes do not need special shoes or any particular brand; they just need shoes that fit properly and support their feet well.

• No bouncers, walkers or jumparoos - When Lula reached an age where she wanted to sit up and observe her surroundings a bit more (I can’t remember when this was now, maybe around 4 months of age), I realised she couldn’t sit in the seats and things we had in the house that belonged to her older sister. So she couldn’t sit in the tub seat we had for her as it was narrow and didn’t accommodate the Boots and Bar. And as you know, babies with Talipes are not allowed in bouncers, walkers or jumparoos, as it can damage the progress made to their tendons. So I bought her a sturdy little seat from Argos that was cushion-like and allowed her to have her legs out in front of her. She was so happy in that. Thankfully the high chair we already had was also suitable. I won’t lie, trying to pass the time with a baby who is not allowed in a bouncer, jumparoo or walker is bit challenging – perhaps that sounds like lazy parenting, but I was used to putting my eldest in the jumparoo or walker for 30 minutes or so each day while I did housework and she loved it. In the end, I just took Lula out for loads and loads of walks with the dog, as she was always content in the buggy out walking in the fresh air. When I eventually went back to work (Lula was 9 months old), I just explained to crèche about her feet and the fact she can’t (regularly) go in bouncers etc. and it was all fine.

When people say the time will fly and you’ll barely remember it – and you want to scream because it certainly doesn’t feel like time is flying – it is true. Those months from June when she was born and we were desperately waiting on her to be seen by a consultant, through to July when she was placed in casts, to August when she was placed in Boots and Bar for 23 hours a day, to finally at the end of November when she was allowed to go into 12 hour wear for the Boots and Bar – on reflection, it did go quickly – maybe just not so much at the time as she struggled badly with sleeping, wind, and general discomfort. The story is a different one now, she is so happy and we can all see how well her leg treatments are working. It is all worthwhile – if you are reading this and you are having a particularly tough time, please just know that, in Lula’s case (and for many others too), it did get easier.

I remember whispering to Lula on one particularly bad Tuesday night when she was in agony ‘I’m so sorry you’re going through this, I’m so so sorry’ and now I whisper to her ‘Aren’t you such a lucky little girl’. The times changed and it got easier thankfully. All of the treatments and discomfort they go through (and the exhaustion and worry that you go through) will be worth it. And I’m sure they will grow up, remember none of it, and never say thanks – just like we all did with our parents!

Other Things to Take into Account

It’s probably worth mentioning that you may meet people who have lots of advice for you or assume the baby has a hip problem or maybe even think the baby has broken legs (I saw one parent post about this on the Facebook Group – it never happened me thankfully). If it’s the summer time and your baby isn’t covered in blankets then more people are likely to see your baby’s legs in plaster casts or the Boots and Bar. People might stare but it’s just because it’s unusual – and as we know the vast majority of people are just hoping that your baby is ok. So try not to pay any attention and who knows, maybe more people will find out about the Talipes condition by talking about it more. I ended up meeting a neighbour who has two kids with Positional Talipes and a nephew with Fixed Talipes. So you might have someone around the corner from you going through something similar – you just never know.

Another question I had at the beginning was whether I needed to do anything for Lula in the house to help her progression, for example should I be doing physio or massaging her feet etc. The consultant advised that the Boots and Bar are doing everything that is required, no need for anything else. So it was a relief to know nothing further needs done… for now anyway.

I have seen on countless occasions on the Facebook Group posts about children who need to go for various procedures/surgeries due to their Talipes condition – all different ages and at different stages of their treatments. If this happens to you/your child, then I would recommend using the Group to ask other parents about their experience and any advice or tips they may have. At the very least you will you have support and know that others are going through something similar.

The last thing I will say is that there is no history of Talipes in my family or my husband’s, so it is just a ‘fluke’. There has been a lot of learning for us as it’s all very new – we had never even heard of it prior to the 20 week scan and did a serious amount of googling. But it is nothing to be scared of, it is treatable, and even though some journeys are easier than others, parent to parent support and a lot of coffee helps.

Looking to the future now, I don’t know what lies ahead – will Lula start having relapses/problems with her treatment; will she start realising her big sister doesn’t have to wear Boots and Bar at night and start querying why she has to; will she start throwing tantrums coming into the ‘terrible twos’ about not wanting to wear them; and will she make the move from the travel cot to the ‘big girl bed’ with ease? I also assume that she will start asking about her condition. So, in 12 months’ time, I will outline my experience in another blog and pass on any hints or tips that might make someone else’s life a wee bit easier.

I hope you and your little one’s Talipes journey is going well.

Take good care,

Dervla.