Talipes with choroid plexus cyst! is it the end?(6 Posts)
so following my recent thread under "positional talipes" just wanted to update those who are interested
on our 20wk scan we were told our ds2 (after a healthy ds1) has positional talipes and so we were offered amnio howevere we were told there is a very small risk for any chromosomal defect as they usualy look for more than one soft markers before they start to worry.
we declined the amnio.
on friday we had a 24 wk follow up scan now in our local hospital as the birmingham woman hospital referred us back as they said talipes doesn't need to be monitored.
The scan only took 5 min and she only had a very brief look at the foot and said it's still turned in and also checked heart and maybe some other organs and said baby was growing ok and everything else seemed fine.
This was then followed by an appointmem with the consultant who couldn't answer any of our question about talipes and down syndrome or any other chromosomal issue and just said that we are still pretty low risk as talipes is not a big deal. initialy at 14 wks we were told low risk for down was 1:9900 ( im 29 )
we came on holiday abroad and decided to have a 4D scan which revealed a choroid plexus cyst which is a water filled cyst 15mmx7mm on the left side of the head.
we were told that this usualy disappears and it doesn't cause any issue.
She also confirmed that talipes doesn't look positional as the whole heel bone seems to be turned in so it looks like a proper bone structure issue which is a bit more serious but still treatable.
we weren't too worried until we looked on the internet which said that talipes and choroid plexus cyst are both soft markers for edwards syndrome (which in most case is fatal for the baby and hardly ever survives)
i called my mw back home who half an hr later called us back with another referral to the birmingham woman hospital for tuesday morning.
We are in pieces and thinking the worst and both of us have already had a little cry.
im now 26wks so i know that termination is not an option but thinking about getting the amnio done as i feel that the worry will cause me and my baby health issues and also feel that we need to be able prepare ourselves if it really is edwards.
i know that nothing is certain yet but i can't help thinking that our ended!
Sorry about going on so much just wanted to know if anybody has been in the same position or any advice
hi hun, i'm afraid that i'm not able to help you with your questions, but i didn't want to read and run. there are many wonderful ladies on this site, who i'm sure will be along shortly to give advice on your particular concerns. i did have an amnio when i was 15wks and it wasn't half as unpleasant as i expected it to be. we were also referred for a cardioscan. unfortunately my story does not have a happy ending, but there are plenty of women on here who have hda happy endings and i'm sure who have experienced talipes in this context.
i was against the amnio initially, but i think (like you're thinking) i would have worried and worried and it would have been no good to me or my baby. at least with invasive testing you get a definitive answer there and then. but i suppose too, a lot rests on what you would actually do with the results! it's a very personal choice that only you and your dh can make. others can advise and share experiences but at the end of the day only you know what you can and can not deal with.
i'm not sure if this has helped in any way, but please know i'm thinking about you and hope you come to a decision which is right for you both xxx
Oh - and ARC are a charity who give impartial advice on antenatal tests and choices - they are an excellent resource and have a helpline number you can call - i spent quite a long time on the phone to them!!!
today we've been to the Birmingham woman hospital where they scanned us again and found that THERE IS NO CYST in little one's head and that woman abroad has made several errors in her comments and that we should not be worrying about Edward's at all as by now there are usually more markers found.
i asked about amnio and basically she said , she really doesn't recommend i get it done as what's the point in risking baby's life with premature labour when there is no reason to do it.(as she referred to our previous comments at 20wks that we were not getting it done then as we wouldn't not have had termination even if he has down syndrome)
i agree with her , there is no point in getting it done now.
We are sooooo relieved that after all he "only" has talipes and that our life can be normal after all and he seems to be healthy and to be honest the prospect of having down syndrome doesn't seem all that bad any more either (even though there is a very small chance of that).
So thanks everyone again and I'll try and enjoy the rest of my pregnancy (as much as possible with such a worrying head)
Good luck to you all
Thats great news, anna Yes, relax and enjoy your pregnancy now, you deserve it xxx
My beautiful five year old son was diagnosed at the 20week scan with bilateral talipes equinovarus and I was shocked at the time and still am now that I was offered a termination for this as like you they said that it could be a soft marker indicating other conditions. Looking back on it Id say that particular doctor couldn't have known much about Talipes because it is horrifying to think that I may have taken his advice when I see how absolutely fine and amazing my little boy is. You could never tell he was born with the worst degree of Talipes on both feet, literally they both looked like they'd been turned around and stuck on upside down! With treatment of the Ponsetti method he was walking at 13months and has never looked back, he even won the running race at his first ever sports day
As a parent gettting information on Talipes when it is diagnosed is quite overwhelming and hopefully you will have been directed to www.steps-charity.org.uk they have a lot of useful info and support. But please dont worry, it is such a simple condition to treat and lets face it a lot of kids need their teeth straightened with braces and thats not a big deal, and straightening feet whilst not so usual is just as straightforward.
All the best
Thanks Isefyre! I'm sorry that you've had a bad experience too while you were pregnant but very happy that it all turned out well! I really hope that our little one is going to be ok and can't wait now to cuddle him and be a mum of two.
Thanks again for your comments and hope your little boy carries on being as happy as he is now! x
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