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Extremely stressed - Talipse - Need some reassurance

(6 Posts)
MnM156 Fri 21-Aug-20 10:42:22

I am a FTM and finally 21 weeks today. So far I have had a very normal pregnancy. My baby was diagnosed with Talipse/Clubfoot in the 20 week scan. We read about it and were hopeful that there are treatments like Ponseti Method that work almost 95% of the times. However, we did not know the full details of why it happens. We were referred to Fetal Medicine and this is what we found out. So the defect happens due to 3 reasons:

1. Chromosomal Abnormalities:
If that is the case then the baby with be born with some abnormality including the physical foot defect. The doctor offered me an Amniocentesis test where they surgically take some fluid from the womb to check for abnormalities; which has a 1% chance of pregnancy termination. I refused the test because I don’t want to risk the pregnancy even though the risk is 1%. The doctor gave me a choice and was a little pleased with my decision...I could sense it in her eyes.

2. Neural Defect:
If the physical foot issue is due to any neural defect, the baby will stop growing and will die by 28/29 weeks. In doctor’s words ‘if this is the case then the prognosis is terrible’. To rule this out, I have another scan with the same doctor in my week 28 i.e. second week of October. If the baby is growing fine by that time then we have nothing to worry about. So that scan is our make or break scan.

3. Isolated Issue:
If the foot issue is an isolated issue, then in her words ‘the prognosis is excellent and nothing to worry about.’ If that is the case then I will have a normal delivery and then they will see if cast/surgery/physiotherapy is needed and how much. Usually all babies tend to live excellent healthy walking and running lives after the early intervention.

In the latest scan they tried to see if they can find anything unusual in his brain and overall the spine/blood flow to figure out anything that can indicate the first 2 cases. They couldn’t find anything. Everything seemed normal so far but obviously they cannot figure out the chromosomal and neural defects just by studying the ultrasound pictures. So we wait and see by week 28 what is to happen.

I guess I am just writing to get some reassurance or any positive experiences/more knowledge on the subject. We were going to start shopping from this week but now I am hell scared and just sitting and praying.

OP’s posts: |
MnM156 Fri 21-Aug-20 16:07:15

Any experience or knowledge of Clubfoot/Talipse???

OP’s posts: |
TenThousandSpoons0 Fri 21-Aug-20 16:29:30

Hi - did you see a fetal medicine doctor? I’m not sure if there are other things that you haven’t mentioned to make her more cautious - but honestly her advice is a little unusual! So I’m wondering whether it was a specialist or not.

Of course a post on mumsnet doesn’t necessarily tell all the information so I may be missing something.

By far far far the most common outcome in club foot is a NORMAL one - some physio perhaps, orthopedic input perhaps, chance of needing surgery to correct - but walking/running normal and no other problems. If nothing else has been seen in scan and your first trimester chromosomal screening was normal, then that is most likely, >95%. Especially likely if there’s any family history of isolated talipes. Also with isolated talipes sometimes it is positional alone - meaning baby just has his/her foot turned into a funny position at the time of the scan.

Generally a neural tube defect can be seen on 20 week scan- very rare to not see it if it’s there. Still a possibility but don’t panic. Same as other chromosomal/genetic/syndromes - very very unlikely if nothing else seen. Also it’s a little more associated with bilateral club foot than unilateral.

I’m not sure why she’s told you the baby might die by 28-29 weeks. This is just not really true (if the information in your post is complete). Even with a severe neural tube defect (which your baby doesn’t have, it would have been seen) it would be most likely that the baby would survive to term, unless you made a different decision. To add to that - there are a range of more minor neural tube defects that are absolutely manageable.

I’m not sure what to advise - often when you’re first receiving news about baby it’s hard to take everything in, is it possible that just the really bad stuff has stuck with you? It might be a good idea to call and try arrange another talk with the fetal medicine doctor or midwife just to go through things again.

I’m happy to try answer more questions and hopefully someone else will be along to share personal experiences. There are lots of previous threads as well if you search.

Darkstar4855 Fri 21-Aug-20 16:44:14

@TenThousandSpoons0 I think the doctor meant neurological defect not neural tube defect which as you say would be apparent by now.

OP, my friend’s baby had talipes and is otherwise completely fine. He has regular casts and might need surgery when he’s older but she says it’s really not that bad.

MnM156 Fri 21-Aug-20 16:57:07

Thank you so very much for your detailed reply. It does give me hope.

We were seen by a fetal medicine doctor. She looked at the baby in great detail and said that she can't find anything unusual other than the foot.

When she was talking about the neural tube defect, she said and I quote 'if that's the case then the prognosis is terrible. Usually baby will stop breathing by 28 weeks.' I then asked 'you mean he will die?' And she just remained silent. Did not answer yes or no which I assumed was a silent yes.

When she saw that I was upset by the time I was leaving she just said 'don't worry, it should be fine.'

There is one case of isolated clubfoot in my husband family. His first cousin had it when she was a baby and used to wear some special shoes till the age of 3 or 4. She was completely fine after that. She is now a young lawyer and doing very well in life. We gave the doctor this info as well. Not sure if it helps or not though.

Thank you so so much for your response. It really does help!!

OP’s posts: |
TenThousandSpoons0 Fri 21-Aug-20 19:20:32

Sounds like a poorly chosen comment she made but not something you need to be overly concerned about then - that’s good! A shame she wasn’t more careful with wording, it’s so stressful to have extra anxiety about your wee one. Glad if I can help take some of that stress away at least.

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