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Pregnant and worried

15 replies

quegg · 08/12/2004 20:35

I am 30 week pg with no 3 and have been told that baby has bilateral talipes. We had a terrible time at 20 week scan when this was picked up as there were indications of other problems but after 6 weeks of messing us about we finally got to fetal medicine and were reassured that as far as anyone can tell from a scan it is likely that the talipes is all that is wrong

We are awaiting an antenatal visit to see a consultant othropedic surgeon, but the wheels of the NHS move so slowly. In the meantime i am getting more and more stressed, and the immense releif we felt when we realised that talipes was all that was wrong has been replaces by a worry and concern, and some guilt on my part that i feel that way (ie i should be grateful that its only talipes) But this is still my baby, and i am so scared for it, and i feel so responsible. If anyone out there has experience in this area i would love to know...why is motherhood so guiltridden?

OP posts:
SnowmAngeliz · 08/12/2004 20:43

quegg, i can understand how you'd feel releif so don't feel guilty on that one! (Save it for the next few yearsSmile
My dd had very slight talipes which was only picked up on once she was born so i'm afraid i don't have any advice but i know at least one mumsnetter has!
Just wanted to bump this for you+

FeastofStevenmom · 08/12/2004 20:48

hi quegg. sorry you are feeling so stressed atm, and that you are feeling guilty about this.

no direct experience, but a good friend of mine from antenatal classes has a baby daughter with bilateral talipes (and some other knee and hip problems) so I imagine at the more serious end of the scale for this problem. she also had the same worry as to whether other things might be wrong, and ended up having an amnio (which she found, understandably, a very scary experience), and got rather fed up of having further scans which didn't seem to add any more info than the 20 week scan had shown.

her dd wore two leg casts (which went up to the bottom of her thighs) for about 5 months. she also had to wear a hip cast then harness for a few months (connected to her hip problems) these casts were changed weekly at the orthopaedic department of the hospital. for the last few months she has been wearing splints (plastic ankle boots) on her feet. she had an operation at six months on both feet - unfortunately the operation on the worse affected foot wasn't totally successful, so she will be having a further follow up operation in a few months time, when she starts to walk.

this is very much though what happens in quite a serious case; until your little baby is born and seems a paediatric orthopaedic specialist you won't know how extensive treatment is. IIRC having an operation at such a young age for bilateral talipes is quite unusual.

in terms of mobility, my friends DD - who is 9 months - commando crawls in a very similar way to DS (they were born 4 days apart) and had far better head control than DS at 3/4 months old.

in general, I know that my friend expects that her DD will struggle with some sports, but apart from that is determined that her DD will be treated as normally as possible. Her DH had talipes affecting one foot, as was treated with casts, and only really has problems with sports such as skiing etc, as his ankle remains a little week, but doesn't AFAIK find it has caused any problems with day to day life.

hope that helps a little

FeastofStevenmom · 09/12/2004 16:39

bump

WigWamBam · 09/12/2004 17:00

No advice, but I wonder if it might be worth putting this under the "health" threads, with "talipes" as the title? You might get more people picking it up there.

quegg · 09/12/2004 20:13

thanks all for advice and bumping! When it is all in perspective ie when not exhausted i am very positive about it: it is really no big deal in terms of our baby and his/her ability to have a 'normal' (whats that?) life. Just some days i start to worry and then whoosh there it goes...Thansk for taking the time to support and advise
Smile

OP posts:
yoyo · 09/12/2004 20:25

A friend had a similar situation. She had CVS and there was a possibility of any number of problems. At the anomaly scan they detected the talipes but were still concerned about heart and kidney problems. She was born with severe talipes but no other problems. She had a few operations and lots of physio. She also had to wear splints for some time. However, she is now three and a half and the only hint of a problem is a weakened arch in one foot. She is as fast as any of the others in the playground! My friend also found it to be a terribly worrying time.
Hope you see the surgeon soon. Please try and be as positive as you can for both yourself and your baby.

SnowmAngeliz · 09/12/2004 20:29

quegg, must be the time of pregnancy too!
I am 29 weeks and constantly worrying about something! Please let us know any newsSmile

aloha · 09/12/2004 22:05

Pop this on Special Needs - there are lovely people there with wonderful children with talipes.

Blu · 10/12/2004 10:38

Quegg: Hello, congratulations on your pregnancy. I have been EXACTLY where you are.

Firstly, relax! You will have a happy healthy baby, who will be mobile, energetic and will astound you with his/her zest for a busy active life. Talipes is treated v successfully with v mild after effects. One of the main actors in The Bill was born with talipes.

DS's talipes was picked up at the 20 week scan, and like you, there was lots of talk about 'soft markers'. It is never explained (it seems) at scans that 'soft markers' are the alternative to 'hard markers'. Soft markers are little conditions that occasionally co-incide with other conditions, generally with no proven link, and with a v low risk as an indicator.

Anyway, v pleased to hear that your baby is basically healthy and has none of the serious trisomies. Like you, once the frightening tests were done, we felt relieved that our baby had a condition that would not affect his health.

Like you, we saw an orthopeadic consultant before the birth. That was v re-assuring, and it gave us a chance to weigh up all the possible options.

However, the important fact is that until the baby is born, the consultant will not be able to make a definite decision: bones do not calcify at this stage and are hard to see on scans, it is impossible to diagnose how far the talipes is 'positional', etc etc. But it will give you a chance to find out about that consultants approach.

Ask about Ponesetti treatment: this is a method which is largely surgery-free, and relies on boots fixed on a bar while the baby is small, to encourage the feet to grwo into a correct position.
Ask about the consultant's approach to surgery if Ponsetti is not thought to be appropriate for your baby. If Ponsetti treatment is not available at your hospital, use the next few weeks to find out the nearest hospital that does offer it. The consultant you see should be prepared to tell you this, otherwise ask your GP for advice or research through the links below.

In fact, once my baby was born, it was found that his condition was more complicated than talipes (but this is v rare), but even so, his little foot, that was pointing inwards and downwards like a ballet dancer on pointe at birth, carries him hither and thither, and he sailed through all the treatment withour a second thought.

Finally, for now, here are two good UK websites for parents of children with talipes:
\link{http://www.clubfoot.co.uk/\clubfoot.uk}

\link{http://www.steps-charity.org.uk/home.php\STEPS}

I have put a link from the Special Needs board, which will hopefully attract other MN with experience of this. Dinosaur's DS is just finishing successfull Ponesetti treatment, for starters!

Please feel free to CAT me (Conatct another Talker: through the button at the top of the page) if it would help.

And again, the most important thing, congratulations.

Blu · 10/12/2004 10:52

And Quegg, Please don't feel guilty. Not about any of your feelings or reactions, all of which are normal and understandable. If you stick around on MN (as we hope you will) you will soon see that everyone feels guilty about something that isn't their fault, and that every emotion, rational or otherwise, has passed through at least one person's mind at some stage!

The other reason I found the meeting with the peadiatric consultant useful was that she was emphatic that the talipes would have been a one-off accident very very soon after conception when millions of cell divisions are taking place, and that it is hardly surprising that sometimes things get tangled. She re-assured me that the bottle of claret I necked before I found out was not the problem, either. Many people spend days agonising about 'why it happnes', and there is of course ongoing research (dioxins in the environment seem a strong contender, along with some genetic pre-disposition anecdotally reported on lots of parents boards), but since there's no-one and nothing to blam, to my mond, the important thing is getting on and enjoying life with our children, and focussing on the extra little bit of support they might need.

aloha · 10/12/2004 14:05

Trinny Woodall (of Susannah and Trinny fame!) has a baby daughter born with positional talipes which she says is hugely better and improving constantly.

DingDongDinosaurOnHigh · 11/12/2004 16:29

quegg - I have a three year old son who was born with bilateral talipes. We found out at 20 week scan as well.

Please do not worry - talipes is eminently treatable - my son's feet are absolutely fantastic now - no-one who meets him for the first time now would ever guess he had talipes! Please do send me a CAT so we can chat more by email. I would particularly recommend that you see a orthopaedic surgeon who has trained in the Ponseti method. Can tell you much more about it if you CAT me. Good luck and don't worrry, it's nothing you've done, and it will be fine! Sorry I ddin't see this before, am not on mumsnet much as have three sprogs myself now. Blu send it on to me.

MerryTissMas · 11/12/2004 19:35

quegg, you should have a look \link{http://www.vh.org/pediatric/patient/orthopaedics/clubfeet\here} for information about clubfoot and the best way to treat it. There is a list on the site of doctors "qualified" in clubfoot treatment, but the good news is that there are far more practitioners in the UK than are listed. Do you know the name of the consultant you are waiting to see?

You have been given loads of good advice here; the severity of the clubfoot can't be assessed until your baby is born, but the vast majority of cases are easily treatable. The treatment is gentle, and won't hurt your baby, but it is rather time consuming and requires plenty of commitment from you (which of course you have already Smile).

Blu · 13/12/2004 11:04

BUMP: Quegg - are you watching this thread - I know you started a couple....

DingDongDinosaurOnHigh · 14/12/2004 16:17

bump!

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