Talipes/club foot at 20 week scan

[don1973]

Morning everyone
We had a hard day yesterday as we were told at our 20 week scan that our baby had talipes in his right foot.
We were shocked and upset but after researching we now understand the condition and are not frightened by it, as we know it is very manageable and treatable.
What we are totally confused and I am super scared by....is having a amniocentesis....should I have one? The midwife put the fear into both of us and advised that we do to tes for other possible chromosone issues.
I was told at the DS test that I have a 1 in 1600 chance of having baby with downs.
The odds of miscarrying after amniocentesis are 1 in 100.
We really do not know what to do and I am tearing my hair out. Can anyone help with any advice please!!
A million thank you's

Hi I didn't want to not respond. I have no direct experience but have you tried contacting

www.arc-uk.org/

It is a charity that helps give advice about antenatal testing

They may help with some impartial information to help you make what I'm sure is a v difficult decision.

All the best

Maybe there are no one on the boards at the moment that has come up against this problem. Are they suggesting that the talipes is a sign that there could be other problems? I would ask them what other things this could be related to, and research those problems, and see if you could manage with a child with one of these conditions. Also find out the likelyhood of a child with talipes having another problem, and make a descision off that. If you feel that you would continue with the pregnancy whatever the outcome, then dont have the amnio.

don1973
did you have nuchal scanning & blood test? If so I would not worry about downs. And don't let the mw pressure you into doing something you may regret later. I have a private consultant. After the tests above he asked if we had planned amnio - when I said no, he seemed relieved and added that
A he would not recommend it for anyone where miscarry risk was not closeish to down risk - so ds test around 200 max
B even then he would not do it lightly - he'd ask us to think what we'd do if it came to the worst first.

My personal feelings and they are just that was that I remember my sheer terror as the ultrasound lady took ages on nuchal scan - I thought something was badly wrong. But watching my LO I also felt an overwhelming wave of love - she was so alive. And I realised that unless it was something so wrong that she would die anyway I could not do anything to her. And I would probably lash out at anyone who suggested otherwise.

Re talipes. My goddaughter has it and she is in good company - Byron et al. She is now 3.5 and walks and runs and causes general mayhem like any other kid. She is also bilingual and ridiculously cute. Yes first 2 years were tough but it was worth it.

Best of luck and big hugs

From our friends experience I would say:
Get ready for some hard work as a parent - physio, doctors, exercises etc
Insist on treatment starting as soon as possible after she is born - it makes a huge difference
If things don't seem right - question and push. I remember there was little progress at one stage and the kid was suffering - eventually they left great ormond street and saw a consultant at c&w. Different shoes were recommended and worked.
Be ready yourself - my friend was shocked at first after te birth and got serious baby blues.

Hi There

Our baby was seen to have talipes on the left foot at the 20 week scan also. No big deal for us, and were half expecting it as my husband was born with extremely severe talipes in both feet. It is really easy to treat these days and even on "the old days" they did a great job on my DH's feet considering they were turned in so much they were literally on backwards. He has played rugby, run for his school etc etc.

I don't think ours was linked to any other potential problem with the baby, my risk for Downs was 1:64000 but it can be a marker for other issues. No-one advised us to have any other testing, so I send you hugs for your next decision.

There is a charity called Steps who have loads of information on talipes maybe they can help.

Lots of love x

Hi both me and my ds where born with this if you need a chat pm me as I'm running too shops before school run

This paper radiologyfacts.org/files/Prenatal_assessment_of_foot_deformity_2005_.pdf suggests amnio not advised unless other abnormalities detected as there is a heightened risk of false positives

My DS2 (now 11) had severe talipes on his left. People really don't notice now, he runs climbs and cycles with all the rest.

steps may have information for you too

His wasn't spotted at the scan. I would see a consultant and get some more info

Thanks for all your replies - found the paper very informative, plain facts, thanks Blondecat.
I also rang the 'arc'charity and the lady gave some good advice.
We managed to see a consultant privately this afternoon. I've decided not to go with the amnio as there were no other markers on the scan, it's been a hard couple of emotional days, I wish we hadn't been here in the first place but i guess life doesn't always do what we are expecting!
Thanks again for taking the time to reply

Hi there, our baby was diagnosed with Talipes at the 20 week scan too. She is now 8 weeks old, very strong, healthy and happy and doing really well with the Ponseti treatment at Addenbrookes. Happy to share our experiences with you if you need any advice about anything :)

I had an amnio and researched the miscarriage rates and it really depends on the person doing it! An alternative might be to have a very good and thorough scan privately with a senior consultant at somewhere like the FMC to see if they can see anything which might warrant an amnio. In my experience they were and are amazing and picked up on things that my NHS scans missed. I also had my amnio there privately with Prof. Nicolaides as his miscarriage rate is very low.

www.fetalmedicine.com/