Structural Talipes (Clubfoot) @ 20wk Scan

[Pod351]

Hello,

Just been told our little boy has Structural Talipes in his left leg. We will be referred to a specialist within 5 days.

Looking to connect with other parents in the same situation please?

Hi - here’s where my username shows up!

I’m a long way down the line with this - it was almost exactly 14 years ago I heard the same as you at the 20 week scan. Scary times but it all seems a long time ago now, and all is totally fine.

I will come back to post again but have to rush to a meeting now - but I found this post from a year and a half ago where lots of people were posting with advice and I put a post in there - take a look in the mean time?

www.mumsnet.com/Talk/pregnancy/4044767-talipes-clubfoot-mothers-help-needed

Briefly, we did ponseti method, it was very all consuming but worked beautifully and no relapses for my son. Please reach out to STEPS charity as well?

thank you i really appreciate that! i'm just a bit in shock tbh, I'm so happy it's treatable but keep thinking about his little feet :(

Hi OP, my now 4 tear old was diagnosed with Talipes during the 20 week scan, I remember the emotional rollercoaster very well.

STEPS charity were really helpful. After a more indepth scan at the fetal medicine unit I was referred to the Children's Orthopaedic team to discuss treatment, that was really helpful. I chose to have an amniocentesis too.

There are a couple of Facebook groups which are really helpful, search for "Happy Feet Talipes New*" and "clubfoot and talipes UK". Do approach those groups with a little bit of caution, lots of parents post there because their children's condition is complex and treatment isn't going to plan, this really isn't the case for most.

Be kind to yourself, it's a lot to get your head around

I do understand- one second you’re thinking “I’m glad it isn’t anything worse, we’ll be ok” and the next second you’re thinking “but his feet! I don’t want there to be anything the matter at all!”

Treatment now is so much better than 15-20 years ago. Outcomes are better too. I can only speak from our experience but it worked beautifully. It’s really hard right now because the only thing you know about your baby is the talipes. You don’t know what he looks like, what books he will like, how he will laugh, what foods are his favourite, or where he is ticklish. So it feels overwhelming. But when he arrives he will be a real person with a foot issue you can help him sort out. It’s pretty intensive, and I was out and about with prams and slings, going into central London weekly, when other mums and dads from NCT were getting in a tizzy about walking down the road to the cafe. So it gets you out and about quickly enough.
My son still has his last cast, signed by a load of friends - it’s so tiny! Be as picky as anything about the boots and bar - don’t be afraid to ask questions or get them to show you over and over, and report back if it’s rubbing etc.
It really didn’t hamper his mobility at all - he just got on with it. Kind of weight training! He’s a very active 13 yr old now - he does have a bit less muscle in that leg, but no one ever notices, and things like swimming or cycling are excellent for building strength. He learnt to ride a bike way before his little brother did, age wise, and it didn’t slow him down at all. Just make the boots and bar non-negotiable. It’s really important. But now I look back and it seems so long ago. It’s all about teenage braces and spots!

@FruitBadger

Hi OP, my now 4 tear old was diagnosed with Talipes during the 20 week scan, I remember the emotional rollercoaster very well.

STEPS charity were really helpful. After a more indepth scan at the fetal medicine unit I was referred to the Children's Orthopaedic team to discuss treatment, that was really helpful. I chose to have an amniocentesis too.

There are a couple of Facebook groups which are really helpful, search for "Happy Feet Talipes New*" and "clubfoot and talipes UK". Do approach those groups with a little bit of caution, lots of parents post there because their children's condition is complex and treatment isn't going to plan, this really isn't the case for most.

Be kind to yourself, it's a lot to get your head around

Thank you I really appreciate you taking the time to reply. Do you mind me asking what sort of talipes your child had and what was the treatment plan like?

@Talipesmum

I do understand- one second you’re thinking “I’m glad it isn’t anything worse, we’ll be ok” and the next second you’re thinking “but his feet! I don’t want there to be anything the matter at all!”

Treatment now is so much better than 15-20 years ago. Outcomes are better too. I can only speak from our experience but it worked beautifully. It’s really hard right now because the only thing you know about your baby is the talipes. You don’t know what he looks like, what books he will like, how he will laugh, what foods are his favourite, or where he is ticklish. So it feels overwhelming. But when he arrives he will be a real person with a foot issue you can help him sort out. It’s pretty intensive, and I was out and about with prams and slings, going into central London weekly, when other mums and dads from NCT were getting in a tizzy about walking down the road to the cafe. So it gets you out and about quickly enough.
My son still has his last cast, signed by a load of friends - it’s so tiny! Be as picky as anything about the boots and bar - don’t be afraid to ask questions or get them to show you over and over, and report back if it’s rubbing etc.
It really didn’t hamper his mobility at all - he just got on with it. Kind of weight training! He’s a very active 13 yr old now - he does have a bit less muscle in that leg, but no one ever notices, and things like swimming or cycling are excellent for building strength. He learnt to ride a bike way before his little brother did, age wise, and it didn’t slow him down at all. Just make the boots and bar non-negotiable. It’s really important. But now I look back and it seems so long ago. It’s all about teenage braces and spots!

Thank you. It definitely feels so overwhelming right now but your story and so many others make me realise it'll be ok.

I think I'll feel better once I know what the treatment entails even though I know it's going to be casts, physio and brace etc. Seeing it all laid out and sorted with doctors might make me feel better?

My little boy had fixed / structural talipes - they mean the same thing, both his feet are affected
(bilateral) rather than just one foot (unilateral). The other version is positional talipes, where your baby has had their feet squashed into a particular position as they grow and run out of space, that is usually resolved with stretches and physiotherapy.

He had his first casts at 3 weeks old and needed 4 casts in total. The first 3 were changed weekly and the last ones were on for 3 weeks, so 6 weeks in casts in total. That is the lower end of a normal nber of casts, the clinic will assess your child's feet each week and keep going until their feet are in a normal position. Most babies need a tenotomy, but my son didn't as he had sufficient flexibility in his feet to go into the final cast with his feet in a normal position. Your child's feet will be scored out of 6 on the Pirani scale, 6 is more severe and 0 is "normal", my son scored 3.5. After the casts he wore a Ponseti brace on his feet for 23 hours a day. Usually this is for 3 months, we were just over that because Easter weekend got in the way of the clinic running at the hospital! After that we went down to overnight and naps only, he's just turned 4 so had a year left of wearing his brace.

Once he was out of casts we did swimming lessons and baby massage, nothing stopped us! I just made sure that he had less time out of his brace later in the day, so it was only an hour in total.

Sorry it’s not particularly relevant to you but it might help, I was born with a club foot 48 years ago, and it hasn’t stopped me from doing anything. Had an operation at two months and wore a splint for a short while, until I started walking I believe and another when I was 6. Did all usual sports at school and was quite a strong runner. Only minus is one foot is a size 6 and the other a size 4. At 48 I am still really mobile and do yoga, running and horse riding as my main hobbies. Obviously treatments have changed and come on leaps and bounds over the years but that’s my long term success story . Wishing you and your little boy all the very best.

Yes, I think knowing what the plan and likely schedule is will help. Though it’s kind of easier to understand how it works when you get going (as with all other things about a baby, I found )
I hope you find out a bit more soon - my info is going to be a bit out of date, but I’m not sure how much things have changed so it might all be the same! Just remember - it’s important, but it isn’t even slightly the most important thing about your baby. You’ve got all that to come :-)

Hi Pod351.. Our daughter has Distal arthrogryposis and had severe talipes on both feet (6 on the piran scale). She had ponseti treatment, about 6 casts I think and boots and bars for 4 years, mostly overnight.

Don't know where you are but we were looked after amazingly by the Dragon centre at St George's in Tooting.. She also had a tenotomy and was discharged around 4 years old.. We then moved overseas. She did relapse a bit and had to have a tendon transfer.. She's in boots overnight now but it doesn't stop her doing tennis, cycling, rock climbing, skiing and all the other activities children take part in.

It ca be quite daunting to deal with initially but a lot of parents have also gone through the same. Steps are very helpful.

One thing I would recommend is that once your child is discharged from treatment you insist on a check up at least every 6 months..

Also children are amazingly resilient and they get used to wearing the boots and bars.. Your furniture may suffer though!