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Antenatal tests

very high nuchal fold .. suspected Turners .. but if not what then?

17 replies

comberbird · 08/09/2011 14:30

hello all. had first scan on Monday and nuchal fold measured 10mm: off the scale bad I know. Am searching for anyone who has had such a poor reading and a happy outcome or some insight into what happens next? Have now had three CVS (!!!) and hope to have conclusive results tomorrow. Poor little mite has obvious fluid around tummy too as well as large nuchal fold and consultant suspects Turners sydrome [know it is survivable btw but not sure I could cope]. Am wondering what happens if my CVS comes back ok? I dread the long process of testing and waiting which may inevitably lead to a termination anyway.

OP posts:

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misty0 · 08/09/2011 15:17

Hi comberbird

So sorry you're going through this.

Cannot offer you any practicle advice or info i'm afraid as my situation was different to yours - but i know and sympathise with all the terrible worry and stress you must be feeling right now. There will be someone along soon who will be able to help you more than i - but for now , and just to let you know you've come to the right place for some gentle advice and support.

xx

Cherrybug · 08/09/2011 15:27

Hi Comberbird - I replied to this thread in pregnancy - glad you've come over here. Sure many folk will be along in due course to give you info and advice.

Again sorry you're going through this - it's horrendous.

A large nuchal is associated with chromosomal abnormalities but can also be indicative of other problems - ie. heart problems etc. So there is a possibility that the CVS will not diagnose a chromosomal abnormality.

The waiting is terribly hard but try to take each step at a time. If you get a diagnosis you then know what you are dealing with and can ask the right questions which will lead you to making the decision that is right for you and your family. Dont give up hope just yet, there are positive examples on here but sadly there are people who have ended much wanted pregnancies (like myself) due to the problems their baby had. I suppose what I am saying is you aren't alone and you can ask for advice and support every step of the way. I really hope you dont have to wait long for your results and hope you have lots of RL support. Cherry x

katiecubs · 08/09/2011 22:42

Hi Comberbird,
so sorry you are going through this horrible time. I had a similar situation to yours and the CVS diagnosed Turners, unfortunately with such a high NT and hydrops the prognosis for the baby was very bad and i had a termination. That's not to say you are without hope at all - there have been some amazing stories of hope on these boards so i'm really hoping you are one of them. Just wanted to share my experience too, take care and i will be thinking of you tomorrow.
Katie xx

Northernlurker · 08/09/2011 22:48

The other major cause of high nuchal would be heart defects. A lot of which CAN be fixed or ameliorated.

Hoping for good news for you.

purcellfan · 09/09/2011 10:41

I had a nuchal measurement of 5.3 and cvs came back clear, although they were really sure it was Downs. I've now had a 16 week scan with a consultant and they think baby has a hole in the heart but they're not sure and we have to wait till 20 weeks! Like you we were hoping for clear info at every stage but has all been inconclusive... Much sympathy with your three cvss, they are suspecting a genetic disorder for us now and want to retest but as they isn't enough sample left they may do an amnio as well after the 20 week scan. There are a lot of positive stories of high nuchal results on this board and lurking on it has helped enormously.

largeginandtonic · 09/09/2011 10:52

I did not have the nuchal fold test with dd so had no prior knowledge. She was born with Turners syndrome.

We didn't even find out till she was 7 and half. She was luckily barely affected. She is tiny and is taking growth hormones daily, has a horseshoe shaped kidney and is totally infertile. She has mild learning difficulties and a few other issues but all in all is absolutely fine.

There are such varying degrees of how affected a child will be by any disability.

It is scary and fear of the unknown must be huge. Just wanted to post so if you find the baby is Turners you can come and find me

comberbird · 12/09/2011 16:17

1 week on, three CVS later and still no results. I am going out of my head. No one seems to be able to answer the simple question why are the results taking longer than expected and when can I have them? Every day that passes if feel my life getting more and more out of control ......

OP posts:

misty0 · 13/09/2011 08:11

Comber have you been ringing up to chase the results? I've learned from other ladies experiences here that sadly its often a case of 'those who shout loudest get their results quickest' in some places.

hun. Hang in there xxx

Cherrybug · 13/09/2011 12:59

What a nightmare Comberbird, as if it wasnt hard enough.

Try phoning as Misty suggests, you should at least be able to speak to a fetal medicine midwife who can let you know where things are at. I really hope you get results today.

largeginandtonic · 13/09/2011 13:21

I would be phoning every day twice a day. How bloody awful to keep you hanging on like this. You must be beside yourself.

ghansell · 13/09/2011 13:51

Hi,
Sorry to hear about your situation. I would be ringing twice a day too they can't leave you in limbo like this.
I had a high nuchal fold which was off the chart too 6 mm. The consultants were sure that something would be wrong. I had the cvs which came back clear. Then we had 2 heart scans and 2 anomaly scans and finally got the all clear at 26 weeks. I am now holding my beautiful 7 week old baby boy.
Hope you get answers soon.

MrsLovely · 13/09/2011 14:00

Hi Comber
I can sympathise so much with your situation, we had a high nuchal fold of over 5mm, and a CVS which told us the baby didn't have Downs, Turners or Edwards but then failed before any more results could be taken.

It is terrible not knowing for certain, especially after going through so much testing. We made the decision not to test further, and instead went for regular scans to check the baby's progress throughout my pregnancy. We also went for cardio scans because, as other posters have said, the high nuchal fold could be indicative of heart problems.

Everything went Ok during the pregnancy, and my healthy little girl was born in June. So there can be hope, in some ways it's the waiting and not knowing that's so very difficult.

FannyLogan · 13/09/2011 14:12

Mine was 4.6mm, amnio was clear and perfectly healthy 18 week old ds now napping as I type.

Good luck xx

Endogirl · 14/09/2011 22:58

Hi Comberbird. I'm so sorry that you are going through all of this and that the hospital aren't being helpful. I would echo everyone's comments and say keep phoning them. If you don't get anywhere, then ask to speak to the consultant or someone senior.

I've been where you are very recently. The waiting bit really is the hardest part. My story is the same as katiecubs but there are lots of positive Turner's stories out there too. Just look at largeginandtonic's post to see one. And so many positive stories where the fold was high but the baby was fine.

I've got everything crossed for you.

xxxxxxx

Rachee · 28/09/2011 22:07

i have a nf of 8.4mm diagnosed.... waiting for cvs results.... fluid on the chest and abdomen too.... but i can't give up till i get the right bad results, as my eyes see a healthy baby on the screen waving... medics can be wrong... and i do wonder how many more times it would turn out well if more people let baby be without termination
( i still may terminate too, but need so many more answers first)

Endogirl · 29/09/2011 18:29

Rachee I'm so sorry that you're going through this. When are your CVS results due? The waiting really can be the hardest bit.

We got bad news at our 12 week scan but waited until 16 weeks to see how she was progressing before we made any decision as like you I needed to see that she was definitely not going to survive before we made the decision to terminate.

I guess you're right in wondering how things would turn out if people didn't terminate but when you're faced with the choice of either ending the pregnancy or just waiting for the death to most probably occur naturally and then face delivering at a far later date which in itself can have complications, I can understand why people make the decision early. It's never an easy decision to make and every one has their own individual thoughts and feelings on it. No-one can tell you what you to do but no-one should judge people for their actions either.

I wish you all the luck in the world for your results and do keep posting on here as we'll try to support you through it all.

xxxxx

ghislaine · 29/09/2011 19:19

Rachee, I think we all want the best for our babies and I can't think of anyone here who has ended a pregnancy when there was a glimmer of hope that things might turn out ok.

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