Club foot showing on ultrasound - any experience?

[NannyPlumForPM]

Hi, this is my second pregnancy and the ultrasound has shown that my little girl has a club foot - or talipes equinovarus.

Has anybody had any experience of this and what they can do after baby is born ? I've had a more detailed scan and they can't find any other anomalies so hopefully this is it - but googling is just causing me more issues

Thanks in advance

I'm afraid I can only offer my husband's experience, and he's 31 so this won't be up to date procedures. He had two club feet. They were operated on when he was 5 months old, and he wore special supportive boots and had physio until he was preschool age. He has very limited movement in his ankle joints (they are pretty much fused) and rather underdeveloped calf muscles, but other than that he's totally fine.

My good friend's ds has club feet (so does the father). He had to have several painful surgeries as a baby/toddler and will probably have to have a couple more before adulthood. But he is now 12 and leads a fairly normal childhood. He can't do certain high impact sports and can't walk long distances. An adult would notice that his feet/ankles are misshapen and he has an odd gait, but my dd who is the same age and sees him frequently only just realized a few months ago that he had club feet.

The STEPS charity is fantastic

Friend's DD was born with this in 2003 but didn't have any op just callipers, which she no longer needs and she is fine now.

My friends ds had this (2009). He had to have a couple of small operations. Then have his legs in casts with a pole inbetween. He will never be amazing at athletics, but otherwise he is perfectly fine now. It might have just been his personality, but he was a ray of sunshine throughout. He never knew any different as he had the casts so young.

My cousin was treated with one op and then a succession of casts

He has no memory of it and is now a plasterer so a pretty active job and is also a part time football coach

A friend of mine had this with both her children. 1st child two club feet, I think they've had a few operations and wore boots and brace to bed and special shoes during the day. Now 5, you couldn't really tell there had been anything wrong and he had his last set of bedtime boots just before September. Her 2nd has only one club foot which apparently is harder to correct, again in boots and braces at night. The kids think it's perfectly fine, they know no different. I think my friend found it harder, finding out that your perfect baby isn't perfect - but he/she is. Club footedness is just one of those things and the medical intervention for them has come on leaps and bounds from those who had the issue when I was young.

My friend was based in London (and though since moved over 200 miles away still makes the trip), if you are then I can find out the name of her specialist who she said is amazing.

I am typing up a novel here. Bear with me!

Look up Ponseti treatment. Originated in US but becoming more standard here now. Operating is now really rare except for perhaps a tenotomy possibly (operation on achilles heel) and it's apparently not half as bad as it sounds.

My experience is that many people incl. healthcare professionals are fairly ignorant on the subject so I would advise you to educate yourself as thoroughly as you can (which you obvs are ) and be prepared to advocate for your child yourself. You may have to get more comfortable with being assertive if you know more than the healthcare professional.

The important thing is that it is totally fixable as long as you do the Ponseti treatment correctly. Whereabouts are you in the UK? I recommend you find out who is the nearest Ponseti-trained expert to you in a normal nhs hospital then have your gp refer you to them for a meeting when you are pregnant, to start treatment as soon as your dd is born.

DD was born with bilateral talipes, both feet, about as severe on the Pirani scale as they could be. We did a lot of research and met with an doctor who had trained with Dr Ponseti himself who advised us basically to make sure DD was seen by someone who really knew what they were doing. So we refused to be palmed off with being seen by the closest hospital, and insisted that DD be referred to the nearest one with drs who were experts. Was quite out of character for me, but as I say, if the treatment is done right, your DD will be absolutely fine, but if not, the consequences could be a long-term problem.

It is hard at times, DD had full length plaster casts from 2 weeks old, it was awful. But, we pretty much stuck to the treatment to the letter, had no problems at all and DD is absolutely fine and you cannot even tell that she has talipes. She still wears the boots and bar at night and will do til she's 4. But again, it's fine, you just deal with it. It's fixable!

Last thought....I personally did not find the STEPS website and forum helpful at all - partly because people only post on there when they are having problems, and not when it is all going fine, so bear that in mind.

I'm off to name-change now as have totally outed myself to anyone who knows me, I just can't walk past a talipes thread if I think I can help! Please feel free to pm me.

Thank you all for your helpful posts!! Looks like I have a lot of reading up to do our first hold had a rare genetic condition so am quite accustomed to telling hcp's a thing or two

I'm in the midlands- Worcester so chances are Birmingham children's hospital is going to be the best option but I'll have a look out for that ponseti method because I want to avoid surgery on the little bairn if possible !!

My dd3 had talipes and it was treated with Ponsetti. I think many babies treated with Ponsetti do not need surgery.

I am 44 and was born with right food talipes. Had a succession of plaster casts to put the foot position back to the right place. All competed before I was a year old and I have no memory of it.

No problems since though when I used to do a lot of sport I'd strap it up beforehand as it's a bit prone to twisting. It 'flails' slightly when I run but it's not stopped me doing anything. I run about 10 miles a week and it holds up well.

I've never got on very well with high heels as it feels a bit wobbly on that side, but that's all.

You're very welcome! I am a little bit evangelical, sorry! Sounds like you won't have any problems standing up to hcps then, I'm sure that helps (you might not have to, obvs, I have just been surprised by the lack of awareness is all).

We found out about DD at the 20 week scan and the idiot woman said, in hushed tones not to go home and google the condition as we'd just upset ourselves, making us think it was something terrible! Needless to say, we went home and straight away did just that, to you know, educate ourselves and found out how treatable it is, and that it would be fine, just potentially a bit hard going in the beginning.

The plaster cast and 23-hr-a-day boots-and-bar stage can be hard work, mainly just because babies are hard work anyway, but it doesn't take long til the boots can just be worn overnight and then it will get much easier.

It will be fine! Good luck!

Cupofteaplease Just out of interest, where in the UK are you?

Nannyplum, I will inquire at DD's clinic about Ponseti in your area, just in case they have any helpful contacts.

That would be brilliant thanks! Yes it does sound quite tricky at first but Ike you say it's only for the first couple of months. Not sure how she will wear clothes, possibly cut one leg off sleep suits etc for the cast?

Another Ponseti evangelist here. DS is now 6 and had bilateral clubfeet, he was treated at Chelsea and Westminster in London and I am constantly amazed at how brilliant his feet are now.

Ponseti should be the standard treatment on the NHS but not everywhere has trained consultants. STEPS can give you a list of where to go if you call them. It's essential that the treatment is followed to the letter.

I was thinking just yesterday that I now barely remember when he wore his little boots and bar every night, it goes by so quickly.

Congratulations on your little girl and DM me anytime

And sleep suits with poppers all the way around the legs were ideal, most places stock them. I also found the boots and bar phase very handy for nappy changes, no feet flying around!

Haha yes I suppose everything has it's perks!

I have two friends with children with club feet. With the one I see regularly you could never tell and I think its the same with the other one. Its amazing.

Both the children are about 2 1/2 and had the operation and the boots. I think they need to wear the boots until they are around 5 but only when sleeping.

MrsLacey we are in Northants and she was treated at Northampton General. We met with the Physio team before she was born to go through the treatment program.

My DS was born with right foot talipes. He is 2 next week. We have amazing results using the Ponsetti method, you really wouldn't know with how his foot looks now.

He has to wear his boots and bar for bedtime and will do until he's four. The hardest bits for us was the thigh to toe plaster which he had from 13 days, but the earlier they can do this the better. We had to go for re-plastering every Monday for six weeks, then he had a little op on his tendon where they snip it to release the tension in the ankle so it can get to its right position. Sounds painful but it's done under local anaesthetic and didn't bother him at all.

He was then plastered up for three weeks, at the end of which the foot was in the correct position, so we moved on to the boot and bar, which he had to wear for 23 hours a day. He found it a bit restrictive at first but got used to it. You have to be firm with yourself to make sure he wears it for the correct length of time otherwise the foot will regress to its original position. After three months of all day wear he was allowed to wear it just at night, but I think this stage can vary depending on progress.

There are two types of boots, white lace up ones and then suede three strap ones. I would try for the suede, as although the lace up are more aesthetically pleasing (and cheaper for the NHS I believe) we found DS managed to get his feet out of them easily! We have no problems with the suede strappy ones.

If I can help any further please ask!

Sleep suits we just bought cheap ones and cut the feet out!! Dungarees with foot to foot poppers are ideal!

one of my dd's best friends was born with quite severe bi lateral talipes
and as you have been told above, the ponsetti treatment route is excellent and though severe our friend didn't have to have surgery.
the early full cast period is hard going but gro bag sleeping bags are a good option for a cover up or tops and fleece blankets. jersey dungarees with the inner leg poppers if you can find them were very good too I seem to remember
at 4 the boots at night period is over, and though our friend has hyper mobility as well so her joint strength isn't what it could be, her feet and ankles are great. she runs as fast as her sister and friends.