Talipes - practical advice

[ShoRou]

Hi I was wondering if I can pick the brains of any parents who've had a child with talipes.

My first baby is due soon and has been diagnosed with bilateral talipes. After getting over the emotional upheaval I now gave lots of questions! I would really like to have the baby sleep in the same room as us but don't have enough room for a cot. Is a bedside crib suitable? Will the baby have enough room and be comfortable?

Are there any other practical suggestions you could offer me? E.g what high chair is best etc.
Thanks.

Hi ShoRou

DS2 was born with bilateral talipes, picked up on my 20 week scan.

I'm not sure how big a crib is but the boots and bar the babies wear aren't too big and cumbersome. The bar is adjusted to be the same width as the shoulders then the boots stick out just a bit at a 60 degree angle if that makes sense.

Being close to crib/cot bars can be quite useful as your baby can lean the boots/bar up against the sides for comfort when they get a bit bigger.

I co slept as I was bf and it was easier also for a day or so after each plaster change DS was a bit unsettled so Ifound it easier to have him right next to me. Perhaps that's an option for you,

Re high chairs we bought a tripp trapp and took the bar off for meals so if DS choked we could whip him out immediately. All being well though your little one should be in boots and bar only at night by six months as ponseti casting normally takes maximum of 12 weeks and the boots and bar for 23 hrs for 12 weeks

I found giving a feed during the castings kept DS calm.

I didn't bother with trousers when we went to the hospitlfor casting, just put DS in a long sleeved bodysuit with a blanket.

The hardest part for me was other people's reactions, when they saw the casts I was sometimes looked at with horror as if ihad broken his legs. I never quite got used to that.

I found a sling really useful too rather than a pram as DS liked being close to me especially after all the faffing around in clinic.

Has your dr said that they want to start treatment within a few weeks of birth? It's important to make sure a referral has been made asap to whoever will treat your child in the days after birth, this can get overlooked so it's good to check.

The first few days in boots and bar can be very tough depending on how your child reacts to them. Enlist help if possible and make sure you have some easy meals ready so you don't have to worry about cooking.

Can't think of anything else right now except if you aren't happy with your consultant/care, get a second opinion. We did and I am glad we trusted our instincts as the initial team made more than one basic mistake. If you are in/near London, the Ponseti team at Chelsea and Westminster are amazing

Gosh sorry I didn't mean to ramble so.

Hope some of the above is helpful

I was born with right foot talipes 45 years ago and had treatment from birth.

You d never know now. It works really well. When I played a lot of sport as a teenager I used to strap up my right ankle beforehand as it's a bit prone to twist, but part from that it's been trouble free.

Hope your DCs do well too! My mum remembers it as a horrible time ...lots of un PC comments about 'handicap' in those days... I am sure you'll find everyone a lot more informed these days!

• I meant long sleeved vest not a bodysuit, so it was easy to get him dressed/undressed at clinic and keep his legs exposed without undresing for cast removal.

Hi,

Thank you so much for the messages, they're very much appreciated. You've settled my mind a lot both for the immediate and the longer term future. I would love to breast feed and baby wear, so knowing it is possible is great! I'm sitting here at 4 am up with pregnancy induced reflux- the joys. Still, I can't wait to meet the babe.

Oh and I meant to say I have no memory at all of the treatment...all done and dusted before I was a year old so I'm sure your babies will not have any recollection of it. Much more traumatic for you than for them, says my mum!

Ah reflux, I remember it well!

I had a baby bjorn carrier which worked well for me, but I know lots of parents prefer a more stretchy wrap type sling. I tried one with ds3 but found it tricky and he had reflux so I had to get him completely upright asap after a feed so I gave up!

Re feeding in clinic I was very blasé about breastfeeding during treatment, but if you're not it's quite ok to ask for some privacy while you get your dc settled into a feed.

It's almost impossible not to get poo on the top of the casts over the course of a week, all I did was wipe off as much as i could with a baby wipe.

A Cuddledry towel is really useful in the hospital environment where there isn't always much room.

I wasn't anything other than besotted with every inch of ds2 when I first saw him, I thought his feet looked gorgeous, even though they were all curled up and in.

Your baby's feet will be scored 1 to 6 in terms of severity when you first see the consultant-6 being the most severe. DS2 was 6 and 6! Try not to worry too much if this is the case, it's amazing how quickly they can be brought back to the correct position.

Your DC may need a tenotomy to release the tendon at the back of the heel following correction-this is a very minor op and done usually under local. I was allowed into theatre to bf ds while the anaesthetic went in. Some hospitals like Chelsea and Westminster do tenotomies in clinic ehich is great as you can stay with your baby throughout-much less traumatic for you. DS needed 2 tenotomies as his tendons were very tight but that's rare.

I'll keep this thread on my watch list in case you post again here. Also feel free to pm me if you think I might be able to help at all in the future.

Oh, finally (!) having bilateral club foot is sometimes considered preferable to unilateral as the affected leg(s) tend to have a slightly slimmer calf, which is less noticeable people say in bilateral as they look the same.

Good luck, hope it's not too long till you get to meet your baby

Hi @AimeeDubucqdeRivery @ShoRou I have just had unilateral right footed talipes diagnosed at the 20 week scan. Feeling very overwhelmed. This thread is old now, so you are well past the Ponseti treatment. I was wondering how it played out for your children and was wondering if they have been effected by smaller calf and shoe size. We had opted not to find out the sex, but we are now wondering if we would prefer to know? I have filled my head with horror stories and worse case secnario, and was upset that if it is a girl, she will struggle more with the difference in calf and shoe size as she grows up?

I was already anxious about the pregancy. I am 45. The baby was conceived with a donor egg, after many years of failed IVF and miscarriages. Just when I thought it was all coming together, we get this news and I feel gutted.
Any advice from people either slightly further on than me, or many years past it would be much appreciated.

Hi @onewishplease . I feel for you so. I found it a huge shock re the talipes and spiralled a bit with imaginary potential scenarios after my 20 week scan. I was already anxious and fear took over for the rest of the pregnancy. I wish I had had some support and help with this anxiety, as it took over what should have been a special time. Is talking to someone therapeutically or a trusted wise friend an option for you?
Congratulations on your pregnancy after such a long and difficult journey.
Giving advice is difficult as everyone feels differently about things in these circumstances. I can only really tell you my thoughts years later. I wish I’d never had all of the additional scans I was told to have after the 20 week one, as they just made me personally more anxious rather than being reassuring. I wish I had had better support, as the ponseti casting was a 45 minute drive away and I had to go on my own with my baby after the first 2 weeks. I wish I had known how humbling it would be seeing my son cope so well and calmly with the treatment. I wish I had been given help to cope with the uncertainty re long term better. I wish I had known that whatever was to come, it wouldn’t detract from the joy and happiness of my lovely baby-who is now a thoughtful, sweet, caring adolescent.
There are things you can do to help with a unilateral smaller calf when they’re older, and oftentimes it’s barely noticeable unless you’re looking for it. There are a good few talipes groups full of clubfoot parents who can advise as you go along. (Facebook has a few).
I assumed my son would be bothered by his feet looking/being different-he is one of the small minority who is more complicated and required further treatment after boots and bar came off at 5. He doesn’t care at all what people think about his feet and his school friends were all breathtakingly sweet and kind when he had treatment later on. He is honestly so resilient and calm. Statistically your baby is likely to have a great outcome after Ponseti, and even if in the unlikely event things are a bit more complicated, you can learn to handle it with calm and strength, as uncertainty and worry is something we have to somehow get used to as mums, with or without any extras like talipes, I have found anyway.
I know it can feel overwhelmingly scary. For me that dissipated as soon as my son was born. If I was advising myself all those years ago I would say find a way to push those scary thoughts away and enjoy growing this wonderful little person.
Sometimes although it feels like the absolute opposite, these things are a gift. I am a much better person for being on this journey, and my son is inspirational. It can be hard, but those dark thoughts about potential futures didn’t do anything but stress me out to no avail.
Do feel free to DM me if you feel it would be helpful, anytime.
Big hugs. Hopefully with a little time it will feel less daunting and scary for you. There’s many talipes mums out there happy to support and Steps is a lovely charity who I found supportive x