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Nuchal scan results not good, worrying times

48 replies

ClareZee · 11/09/2010 11:04

Hi,

Well, we've been thrown onto a bit of a rollercoaster. We had our 12 week scan yesterday and had expected it all to be a bit of a formality but things took an unexpected turn. We had declined the combined test but the sonographer saw the level of nuchal fluid was significantly higher than it should be and had to let us know - it was 6.7 so not even borderline high. The normal range is up to 3.5. She was very kind to us and we have no issue with being told given the measurement. We were offered the blood test straight away and decided we had to have this to give us as much info as possible.

We were also offered a pretty much instant appointment with a consultant at our area's main maternity hospital (scan was at a smaller one). The consultant agreed with the nuchal measurement and spent time explaining everything to us. Basically, it could still be nothing, could be a chromosome or genetic problem (such as Downs), could indictate a heart problem or other systemic issue. She did say she has one lady who is now 20 weeks pregnant and had a nuchal reading of more than 5 for which they have so far found no reason (she had CVS and has had heart scans and all look normal) so we are still optimistic that things could be ok, although obviously there have been a lot of tears over the last 24 hours and both of us barely slept last night. On the positive side, she could see and measure the nasal bone - with Downs Syndrome this would be absent in 3 out of 4 babies.

Blood tests were sent through quickly and back before lunch today. These were less worrying than we'd feared. By blood I am low risk for the two more serious chromosome issues (18 and 13) where the prospects are pretty dire. On the Downs Syndrome front the blood was a bit raised on HCG (2.19) which can be a marker but on the second measurement (PPAP-A) we were actually slightly higher whereas you would expect it to be lower for Downs. Sorry if this is all a bit scientific but still trying to make sense of it all.

Anyway, overall we have now been given a 1 in 6 chance of Downs Syndrome, based mainly on the nuchal - I was told my bloods are "not that bad". I'm 31 years old.

Next step, we have an appointment at St George's Fetal Medicine Unit in London first thing on Monday. We'll see another consultant and have another scan and after that, unless anything changes dramatically, we're looking at CVS. If you'd asked me 48 hours ago about having this procedure I would have said almost certainly not but now with so many question marks hanging over us we're both starting to feel that we just need more information. It's been suggested that St George's has a better than the national average rate in terms of miscarriage - 0.7% - which is a bit reassuring, however, it's not a decision we're taking lightly. This is the hardest thing either of us has ever been through so far in our lives. This is our first baby and very planned and wanted.

If the CVS finds nothing, we will still need to have a very detailed heart scan at 16 weeks as CVS can only rule out some things but we kind of feel that we have to start ruling things out now so both we and the doctors can plan ahead.

Trying to stay positive and hold onto the fact that it could still be nothing major. Plan to rest up this weekend to try and feel as strong as I can for Monday.

Please keep everything crossed for us.

X

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PosieParker · 15/09/2010 09:28

Cinema? if you're not working or loads of movies?

Akkis · 15/09/2010 09:30

Movies are a good idea PosieParker. Delve into another world. Am going to visit a friend later and taking my toddler to a music group, so hopefully that'll take my mind off things.

PosieParker · 15/09/2010 09:34

All the bestxxx

AmazingBouncingFerret · 15/09/2010 09:39

Hope all goes well today.
My sister had a very high NF measurement. She was given a 1 in 2 chance of Down's and told the baby had a heart condition.

She is now about 23/4? weeks pregnant (maybe more the weeks are flying by!) and all test results came back negative and at the 20 week scan they couldnt find anything wrong with the baby or her heart!

I hope you get to tell people the same sort of story.

jeffily · 15/09/2010 11:36

Hi everyone

I just had the phone call, and all the babies chromosones are normal! So we are in the clear for Turners, Down's, Edwards and Patau's. Now we have to wait the two weeks for the full karyotype just to be sure that all is well, but it is looking more hopeful. Such an enormous relief.

I really hope that you don't have too much longer to wait Akkis and Clare. Thinking of you both so much, and hoping with every atom of my being that you get good news too.

J xxxxx

JFly · 15/09/2010 13:02

Brilliant news, Jefilly. Hope the wait for full results goes quickly.

Best to others waiting to hear. It feels like a lifetime, I know.

JFly · 15/09/2010 13:02

Oops! Jeffily. :)

Akkis · 17/09/2010 08:39

Hi Jeffily
That's fantastic news! So pleased for you, I can imagine what a relief it must be. Hope the rest is good news for you too.
We're still waiting for any results. It's been a long week. Today should be the day though...I hope. Fingers crossed. Hope you're OK ClareZee - good luck!
Take care
A xx

jeffily · 17/09/2010 19:30

Thank you Akkis. Hope you did get some answers today, and that you had good news.
Thinking of you and clarezee lots at the moment. x

ClareZee · 17/09/2010 23:05

Hi everyone,

We had our results this morning and were given the all clear for the four major chromosome abnormalities (Downs, Edwards, Patau and Turners), which was a huge relief.

Really hope all is well with you Akkis? I stopped checking the board after Weds as didn't want to stress myself out by comparing waiting times too much - we were told that for different people it can take different lengths of time and also depends on the lab too.

So pleased your news was good Jeffily.

We've got an appointment for an early anomoly scan follwed by a cardiac scan early Oct (same day), by which point I'd hope we'd have also had full karotype back.

Thinking of you Akkis. If you haven't had the results yet, we were told it could possibly be Monday for us - our local hospital had offered to check for us on timings if we hadn't heard this morning.

Thanks to everyone for all the support so far. Will keep posting.

XXX

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peelprincess · 18/09/2010 10:01

Hi everyone. I hope you have read my earlier post on here - my NF was 6.7mm along with 1mm fluid on babies stomach at 12 wks. We were told to expect the worst with such a high reading. We had cvs and got normal results. Up to now we've had 5 scans Inc fetal cardiogram and detailed anomaly at 20 weeks. Baby looks absolutely fine and her nt had reduced at 16 weeks to 2.7mm and the fluid on her stomach had gone. I am now 22 weeks and have been discharged by the fetal medicine unit and told to go and enjoy my pregnancy.

Obviously they can't check for every little thing antenatally but it's the best news we could've hoped for after the initial nt reading. It's not always bad news and the specialists have told me that the nt reading is just a soft marker. I wish you all the best and hope everything turns out to be ok.

ClareZee · 18/09/2010 11:26

Hi Peelprincess,

That's great news, you must be so happy and relieved. Thanks for posting the update - our nuchal reading was exactly the same as yours so it's nice to hear a reassuring story. It looks like we'll be heading down a similar route to you with extra scans so hopefully we will also be ok. Apart from the high nuchal, our scans so far haven't found anything else worrying and my bloods were also not that bad. I hope you enjoy the rest of your pregnancy now.

Just wondered, did you find out the sex from the full CVS report or through extra scans? Before all of this we were going to let it be a surprise but that's no longer important to us now and in fact I wonder if it might help us to connect with the baby more if we know the sex. Just wondered how you found out.

X

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Akkis · 18/09/2010 12:57

Hi girls,
Fantastic news for you ClareZee!! Great to hear that most of the time everything seems to be OK after all.

We had our results through yesterday and unfortunately our results came back positive for Down Syndrome, so not so good. Am in a bit of a blur at the moment and not sure what's going to happen next, but either way, it'll all be fine in the end. Have a strong relationship with my husband, so we'll get through it together.

I will admit though, that if I ever do get pregnant again, I will think much more carefully about whether to have any tests done. In fact I would probably choose not to have any at all and just deal with whatever happens. It is different for everyone, but for us, the situation we are in now seems impossible.

It has been such a great support to follow your stories this week while we've been waiting for the results. It helps to know that others are feeling the same. Thank you!!

I am sure you will go on to have lovely healthy babies and wish you all the best for the future.
Take care xxxxx

jeffily · 18/09/2010 13:11

Akkis you seem like such a strong, wise person in your posts. There is nothing that I can say that will make any difference to the world of confusion you must be in at the moment, but I am thinking of you. I am sure that you and your DH will find the best way through this for you and your family.

I totally agree with you about the testing. I just breezed into this one, with no thought as to the possible negative outcomes it could have. And then we had a month of stress and worry, though we have had a positive outcome so far it could still not be good news. A part of me can't help thinking that if we had just carried on with the pregnancy and not had the scans, we would just deal with whatever happened once the baby was born. It's not an easy choice. I'm not sure I will ever be able to go through pregnancy again after the three I have had so far, but if I do I will think very seriously about testing and scanning, that's for sure.

clarezee I'm so pleased that you had also had good news. It has just sunk in for me now, but I am waivering between feeling pleased and happy, and worrying that they will find something serious in the full karyotype. Over all I am telling myself just to enjoy the next week or so though, because even if it is bad news I would rather have had a happy period in between. I think this whole pregnancy is going to be pretty stressful for me now. I am am worrier I know!

ClareZee · 18/09/2010 14:31

Hi Akkis,

I'm so sorry your news wasn't so positive. It's so hard to know what to say but we are both thinking of you and your husband. It sounds like you have a strong family to support you and as you say I'm sure it will all be fine in the end.

Thank you too for your support this week. It's so hard to find yourselves thrown into a situation you never imagined would happen. I know what you mean about the tests - it is a double edged sword. To be honest, we weren't going to have the combined test until the decision was taken out of our hands. Be strong and take care.

XXXXX

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maisiemackenzie · 18/09/2010 14:43

hi Akkis, hope you're ok. i have a 3 year old dd with downs syndrome, and i just wanted to say it's really not that bad! feel free to ask me anything, or go over to the SN board where everyone is lovely!

Akkis · 18/09/2010 15:16

Hi ClareZee
That's fantastic news on your results! So pleased and relieved for you.

Unfortunately ours weren't as good and we got a positive for Downs. It's all a bit of a blur at the moment, but I am sure all will be fine, whatever happens.

I just want to say thank you so much to everyone for your support. It's been so helpful to know others are going through the weird and painful time of waiting for results at the same time as we were.

I am sure you will carry on to have a healthy and happy baby and I wish you all the best!
Take care xxxx

Akkis · 18/09/2010 15:20

Sorry everyone! It looked like my post from earlier hadn't gone up so I posted again, and then the new ones suddenly appeared.

Thanks girls for your kind messages. And thanks maisiemackenzie for your offer and tip about the SN board. Am trying to soak up as much information as possible, so will definitely have a look.
xx

SandStorm · 19/09/2010 17:21

I have no personal experience of Downs but at a childcare conference I went to many years ago the facilitator welcomed us all with this reading and it just stuck in my mind.

peelprincess · 20/09/2010 13:45

Hi Clare - yes we found out the sex when the full results came back. I actually asked, I'm not sure whether they tell you automatically in case you don't want to know. Keep us all updated and good luck xx

ClareZee · 24/09/2010 22:14

Hi all, another update...

Had an unexpected call from our hospital at 8pm this evening. Our full CVS results are now back - the ones that look at all of the chromosomes - and they are normal. So pleased and a nice start to the weekend. We now have just over a week to wait until our early anomoly scan and cardiac scan. Will try not to worry too much about those for now and enjoy the wedding we're going to tomorrow.

Thinking of those ladies who are also going through a similar process to us and are also waiting.

Akkis - hope you are ok too.

XXX

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kmummy · 25/09/2010 12:41

That's fab news Hun! Did you find out the sex? X

ClareZee · 26/09/2010 21:25

Hi Kmummy,

We haven't found out yet but have been told that there's a piece of paper at the hospital that says! I think we're going to try and keep it a surprise for now although very tempting.

X

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