Bilateral Talipes (Club feet)

[colourful20]

Hi

I had my 20 week scan today at 20+6 and was informed by the person doing the scan that my baby has bilateral talipes, which my sister told me was club foot. I'm due to go back to the hospital to be seen by a specialist on Monday to have this confirmed and discuss treatment etc after my baby's born. I've not heard of this condition before but have been doing some research and I know that there is corrective action which is a long drawn out process.

This has left me very emotional , I know I've only just found out and I will come to terms with this but at the moment I am feeling quite devastated that my baby isn't "perfect". I know this thought is irrational as this is my baby that I planned with my OH who I love dearly and regardless our baby will be perfect to me. I also feel guilty for feeling this way as things could have been so much worse.

I did plan on telling everybody about the pregnancy after this scan but I will be deferring the announcement until later when I feel more able to deal with this without bursting into tears and I just hope noone asks about my bump which is ever expanding!

If anyone else has gone through the same or similar issues I would love to hear your story.

 

[Jo.t]

I found out yesterday at my 20 week scan that my baby has this in 1 foot. We have a repete scan on Tuesday to find out more.

I notice this was a little while ago so I hope you appointment well well.

xx

 

[broody1984]

Hi, I was born (28 years ago) with it in both feet. I was given physio as a baby and I had my ankles cast to straighten them.

My feet/ankles are fine now- you wouldn't know I'd ever had a problem, I have never seen a picture where I looked odd as most babies squash their legs up into odd positions.

My parents didn't know until I was born so the treatment was only started about 2 weeks after I was born.

Hope this helps put your mind at rest a little

 

[Alias]

My daughter had this, diagnosed after her birth. At the time it seemed awful, and I felt I had let her down. But the procedure to fix it, although long, is pretty painless thankfully. DD was in leg casts for 5 weeks, then the boots and bar. I still have het first pair of boots, they were tiny, size 0000. Once she adjusted to them (and we did!) it was fine. She is now 2, and has since been treated for hip displaysia as well, which was so much tougher. Her feet are fine though, she is running around with her friends no bother.

Typing on my phone so a bit brief, but if you have any questions then ask!

 

[colourful20]

I found out yesterday at my 20 week scan that my baby has this in 1 foot. We have a repete scan on Tuesday to find out more.

I notice this was a little while ago so I hope you appointment well well.

xx

Hope your scan went well. Mine confirmed bilateral talipes but all other measurements seemed normal therefore we were informed it is unlikely that it is linked to another syndrome. The hospital didn't do any further tests and have discharged me from consultant care. After having time to adjust we are feeling much more positive about the situation. We will be referred to 1 of 2 hospitals each about an hours drive away to undergo the Ponseti treatment. If your needing more information about Talipes have a look on the Steps Charity page.

I wish you lots of luck and if you need to chat please feel free to send me a message.

x

 

[colourful20]

Thanks everyone for your responses, it has all helped me to think more positively about the situation. Things could have been so much worse.

I've announced the pregnancy and even started to share the news about the baby's feet. As the treatment will be started and hopefully finished while the baby is young I'm going to fully document the treatment so that it can have an understanding for later on. I'm also going to share this with family and friends to raise the profile of Steps Charity which has offered some support to me.

Once again thank you for your support.

 

[ooSweetPea]

My little man was born with bilateral talipes - underwent ponseti treatment and his feet are just about perfect now. His feet were REALLY bad when he was first born and it is amazing how far he has come!

We started treatment at 6 weeks rather than 1-2 weeks because he was born at 35 weeks and had to overcome that bit before getting started with casting, however I did a lot of stretching with him which the dr said saved weeks of casting. He had casts for about 7-8 weeks, then was braced for a little while. He would not keep a Dennis Brown bar on no matter what we tried so he ended up in just the lower section of a Wheaton Brace which was a godsend. After a few weeks of that we had his heel cord released on one side only and then he was braced again - and now the only way I can tell he was born with talipes is the more severe side (the side the release was done on) is a little pigeon toed when he is barefoot. That and his feet are a little wide!

If anyone has any questions I'd be happy to help!

 

[tlm]

Hi girls! I know this is an older thread, but I had my anatomy scan yesterday and found out that one of our boys has clubbing on both feet. I am very sad for him and the road ahead, but it sounds like everything will be ok!

I would love to hear updates on how all your little ones are doing!!

Thanks for this thread, it gives me hope!!

 

[colourful20]

Hi Tim

My son Lucas who I originally started this thread about was born 6th October - 9 weeks early and it has been a whirlwind ever since. He had to have surgery at 5 days old for a perforated bowel, then there were concerns he had Down Syndrome due to the talipes and a few other soft markers. The results on this came back clear.

With regards the Talipes the hospital scored his feet as follows right foot 3.5 and left foot 5.5 the most severe score is 6. He had his first set of casts at 7 weeks old, two weeks after he came out of the hospital. The casting is going very well and he is now on his fifth set. His feet have now both been scored as 0 and we are awaiting delivery of a very small set of boots (Lucas is only 7lb 10oz now at three months old).

We attend a hospital in Sheffield, UK this is about 50 miles from home. Once at the hospital his legs are soaked and the plaster casts removed. He is initially settled while they are soaking the casts but once they start removing them he gets quite stressed. After the casts are removed he has a bubble bath is then weighed and then cast again. He normally sleeps through them applying the new set of casts. The night he has the cast change is generally unsettled as these are cold and damp before they set.

Although at the time of initial diagnosis it is daunting as parents we do what needs to be done. The procedure is not as bad as I thought it would be and the end result will be that we will have our perfect children with their perfect feet. If you need to chat please feel free to send me a msg. Also have a look at STEPS on www.steps-charity.org.uk they have been great and provide information about the condition.

Keep well

Sian

 

[tlm]

Thanks so much for responding Sian!! I was pretty upset after the u/s yesterday. DH and I sat in the car talking and I started bawling. I am thankful to hear the process isn't too bad! I know it will be hard, but it will work and he can have a normal life! I feel bad saying "normal", but I just don't want him to be limited in what he can do. It just breaks my heart!

 

[colourful20]

I was the same. My partner helped to ground me. Before Lucas was born even prior to understanding the condition he said that regardless we would love the baby and ensure it had the best life (we didn't know the sex at this time). I immersed myself in researching the condition which made me thankful that it was something that could be corrected - things could have been so much worse. When he was born his feet didn't look as bad as I thought they would - just two cute little feet that instead of being straight were bent so the soles of the feet faced each other. Prior to casting them I did some exercises provided by the physio this has meant that his feet didn't stiffen prior to starting the casting.

For us, with all the other issues we've had since Lucas was born the feet is a minor although drawn out issue. He is a normal baby with the same normal needs and before we know it he will be walking and running. I am thankful that I live in a country where skills and resources are available to provide the treatment which will ensure there is no long term disability from this

 

[tlm]

You have a wonderful outlook and that has helped calm me down some, thank you!! I feel the same way, I already love these little boys so much no matter what! And I too am thankful that his heart, brain, kidneys, spine, etc are all ok! And this is just a minor glitch that we will have to deal with.

 

[colourful20]

The Steps Charity site has a lot of information including a guide on the Ponseti treatment which is a non surgical treatment - manipulation of feet and casting, tenotomy (although this isn't always required), and then the boots and bars. There is also a guide written by one of the parents. They also have a forum and a DVD showing the treatment. It is a small charity based in England but I'm sure the treatment is very similar if the non surgical route is followed.

Also, in some cases if the talipes is positional physio is all that is required although from the research I've done talipes is most likely fixed if noticed at the 20 week scan.

I wish you and your babies all the best and although it's difficult try not to let this ruin your pregnancy. It's a magical time and before you know it you will have those babies in your arms and be wondering why you spent so much time worried that your babies wouldn't be "perfect". Life is precious and your children will be strong because you are

 

[ooSweetPea]

Hi Tim! My little guy is now 20 months old and we have been done with treatment for about 6 months (still see dr but no more brace - although being braced for a few years at least at night is common as well). We went with the Ponseti method which was absolutely amazing. Our dr tweaked the treatment a bit as my son was the first baby that he dealt with that no matter what could get out of a cast within a day - not to mention the dennis brown (boots and bar) bar! We ended up using AFO braces that went up about 2/3 of his calf - it was the Wheaton Brace without the upper leg attachments. The brace kept his feet from being able to curl inward because there is a piece of the brace that runs along the inside edge of the foot and keeps it straight - if you google you'll see what I mean! I loved this brace as it allowed for so much more movement as his feet weren't constantly hooked together although I know it isn't customary - but it worked so well for him.

He had to have the tenotomy on one side which was done in the drs office. It was rough however looking back it was not as horrible as it sounds! His Achilles was only stipled (small holes punched with a large needle to allow for it to stretch), not cut the entire way (bc dr was concerned about him getting his cast off before it healed) and sure enough he had the cast off the next day. We put him straight into the brace after that which he couldn't get off and it healed perfectly.

When he was born his feet looked REALLY bad... Almost turned entirely upside down - and honestly now unless I tell people they have no idea that he was born with clubfoot. His feet are a little wider than usual, but I think he got most of that from DH haha! He also walked a few weeks before his first birthday so right on track with that too! Some babies even learn to walk while wearing the boots and bar! It is amazing how the ponseti treatment works and how quickly you will see results, especially if you start shortly after birth when the feet are super easy to manipulate.

It is so hard to be told that your baby isn't 100% 'normal', and to me clubfoot was such a 'deformed' sounding thing... Something that people were born with 100 years ago and it just shouldn't happen anymore in more 'modern' times. I always hated hearing people say 'well at least it wasn't the heart, brain, etc' or 'it's the best of the worst'... You don't want ANYTHING to be wrong with your baby even if its 'the best of the worst' or whatever. However I will say now that looking back, it was so tough to go through but it seems like a breeze now.

This baby's feet are normal and when DH and I heard that we both kind of looked at each other like 'what are we going to do without all the extra appts and dealing with casts and braces... sit around and stare at eachother?' You just kind of get in the swing of it and it becomes normal to you! It will def be strange not having all the 'extras' that clubfoot brings this time around, that's for sure! As for children with clubfoot being treated with modern medicine nowadays - being 'limited' is extremely rare. Sometimes I wish he would stop running around for 5 minutes!!!

If you have any questions at all feel free to PM me or ask on this thread hang in the momma you will totally make it through this

 

[ooSweetPea]

Thought I'd add some pics for you

First born - his 4th toe was also curled over the top of his foot on both feet as you can see in this pic:

https://img.photobucket.com/albums/v332/NikkiShuller/17D9B9A4-2845-4265-8952-375E07D57483-13806-00001937BD7CFA7A.jpg

After getting his first set of casts:

https://img.photobucket.com/albums/v332/NikkiShuller/38EB8C59-9DA5-4544-8214-9D2FDCA669DA-13806-00001937A867DF38.jpg

Getting one set of many casts - this was towards the last set:

https://img.photobucket.com/albums/v332/NikkiShuller/A1761527-4BF9-4BFE-A0AE-0D9EA0EF2C6A-13806-0000193760C6B944.jpg

Sitting with grandma right after his tenotomy (usually his casts went up to his diaper this was the only one that didn't) :

https://img.photobucket.com/albums/v332/NikkiShuller/AA053569-13A3-4FE3-8F7D-8A8D1C6057E6-13806-00001936AFF719FD.jpg

Crappy pic but the only recent one I have of his bare feet recently:

https://img.photobucket.com/albums/v332/NikkiShuller/AB34141B-CC96-4E61-8D0E-3F71E9048488-13806-00001935A7EEB241.jpg

Here's a recent one of his standing but with socks on - ignore the outfit LOL:

https://img.photobucket.com/albums/v332/NikkiShuller/92E7E30B-F470-4B17-8FFD-5CE3BC35F825-13806-00001935BC967B9B.jpg

If you want let me know and I can try to get some close up pics of his feet - if he'll stand still long enough that is!

 

[tlm]

Thank you so much Sweetpea! Your story and pictures mean so much, thank you for taking the time!

I just called the pediatric ortho surgeon and scheduled a consult for the beginning of February. I am assuming we will have another u/s with the mfm around the end if this month to check on the status of this. The only bummer is the specialist doesn't have privileges at the hospital I am delivering at. So my oly concern is if the boys come early and they have to spend any time in the hospital NICU we might run into issues especially since he will need to be coasted around 7 days after birth. I have an appointment with my OB this Wednesday and intend to ask a bunch of questions. Maybe she has priveledges at the hospital that the specialist does... I really love my OB so I am hoping I don't have to switch, but if I have to I will.

I will try to keep you updated! Your stories have made me feel so much better, thanks for allow the help!

 

[tlm]

PS Sweetpea - He is such a cutie!! Glad this process hasn't dampened his spirit! And congrats on the healthy little girl!! I bet it's a big weight off your shoulders!

 

[ooSweetPea]

No problem - if you ever want to chat or have questions I'm here

Def ask the specialist about when casting will be done in case of a preemie - DS was a 35 weeker and they did not want to cast until he had gained a little weight as a tiny baby hauling around heavy casts burns a lot of calories that they aren't big enough to spare at that point! That way you can sort whether you need to have OB and foot specialist available at the same hospital or not beforehand. Fx'd that its a non issue and they come home right away though - we avoided going to NICU at all but he was still tiny so had to wait for a little weight gain before starting treatment. During those few weeks I did stretching very often with him which the dr said helped immensely when I took him for his first casts as the process had already been 'started' and his feet were much more flexible than at birth just from the simple stretching that I did.

Thanks for the comment - I think he is the cutest but of course I am biased hehe! He was totally a trooper though the whole process - it was just normal to him I think - def harder on the parents than the baby! He just kind of bumped right along like all was normal - although he spent a ton of time trying (and succeeding) to get those casts off! He had it down to a science by the end and ended up with the nickname 'Houdini' at the specialists office because of his quick escapes!

Yes, it's very relieving to know that this baby's feet are ok - but also strange because we are just used to all that being our 'norm'!

And meant to say OMG TWINS!! You are in for a beautiful whirlwind!