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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Down's syndrome Risk

30 replies

fluffycats · 31/03/2009 12:25

Worried about Down's Syndrome. I was given a risk of 1:95, but this was mainly based on the blood test. The nuchal fluid at the back of the neck measured 2mm in one scan and 1.8mm in another so is fine. But I went for a CVS yesterday where they did more scans and it turns out my baby has a reverse flow Ductus Venosus and they couldn't see the nasal bone.

I'm beginning to feel there is little hope of having a normal baby as the odds seem to be stacking up against us. We should have the results of the CVS in a few days but in the mean time I can't stop worrying and crying seems to have become a major past time!!

Has anyone else gone through anything similar that can give me some reassurance?

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StarlightMcKenzie · 31/03/2009 12:29

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StarlightMcKenzie · 31/03/2009 12:31

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Notquitegrownup · 31/03/2009 12:36

Fluffycats for you. I was given a risk of 1:5 after our nuchal scan with ds1. We did a lot of reading about Down's, mainly on the website Mothers35plus which we found hugely helpful. We decided not to have further tests and to go ahead, fortified with the advice and experience of those who had very very positive experiences of raising children who happened to have the extra chromesone.

It was a very stressful time for us, nevertheless, and I feel for you. The waiting is awful, but maybe there will be others who can offer you more advice and support.

I hung onto the words that one mother had shared - something like 'we knew that our child would have an extra chromesone and would have Down's. The test revealed that. But he is the most loving and happy member of our family and if we could magically change him now, I really don't think that we would. We knew that he was going to have Down's Syndrome, but there is no test to tell whether your child will go onto drug addiction, crime or a thousand other problems which people face everyday.'

HTH a little.

messymissy · 31/03/2009 12:47

I too had a high risk but decided against all additional tests, as I knew that no matter what I would have the baby. The nuchal fold I cant quite remember what it measured it was between average and high but when my age was added to their risk calculator it went through the roof. BUT the doctor was encouraging saying that they could clearly see the nasal bone - at 12 weeks this is a very good indicator that the baby does not have downs. Did your doctor mention the nasal bone?

I went for the anomaly scan at 20 weeks and thankfully all appeared ok but it did nag in the back of my mind for the rest of the pregnancy and I have to admit I was relieved that when my dd was born she was ok. I know I would not have loved her any less but I was afraid I would not be able to handle the extra responsibility and needs.

madwomanintheattic · 31/03/2009 12:53

please post on the sn board if you feel you would like more information from people who have been through similar.
hugs to you, it is a shock. when my dd2 was born her problems were totally unexpected, and i am sure that having to deal with possibilities rather than being presented with a fait accompli is a very different experience.
do you feel able to get some more information on downs or would you prefer to wait until the results of your cvs? sending you strength x

busierbee · 31/03/2009 13:00

Fluffycats - I have been there , I am there. The waiting is truly awful. Have hope and take deep deep breaths. My thread is there if you have the strength to face it - but do not read it if you wobbly. Reach out if you need a shoulder - there are many many people who have had cvs and had very very healthy babies.
BBx

Original poster

fluffycats · 31/03/2009 13:56

Sorry, I shouldn't have posted this have requested it to be removed

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madwomanintheattic · 31/03/2009 14:02

fluffycats - don't deny yourself some support. lots of people have dealt with what you are going through, and ultimately you are the only one that make any decisions based on the tests and advice you are given.
sending you strength to get through the next few days until you get your results. x

StarlightMcKenzie · 31/03/2009 14:04

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pagwatch · 31/03/2009 14:08

fluffy
People really won't judge you - just ask what support you want.
Mothers of children with Downs syndrome are around to offer their views if you want that kind of support. But if you feel you are intending to terminate there are many mums who have shared that experience who are willing to speak to that too.
Just say what you need.

busierbee · 31/03/2009 14:10

Golly please do not feel that. YOur odds are really good you know. Mine were 1in2 and 1 in 7. My thread is pregnant again after termination for downs - i have had so so many kind words and am sure you will too in your predicament. There is no right and wrong here. You need help and all here will give it I promise you. Do share your fears - and do let us know how you get on. I know how truly awful the waiting is.
with kind thoughts

busierbee · 31/03/2009 14:20

Fluffy - there are so many people there for you when you ready. Is ghastly time. I was so frightened by all the info and opinions sometimes. Take time. Reach out when ready.Be gentle on self. Busier Bee xxx

Original poster

fluffycats · 31/03/2009 14:50

Its not really that, I have spent the last week reading all the other threads and have read loads of amazing accounts of people who are in similar situations but I haven`t come across anyone who has had these 3 things wrong together:

No nose on baby
quoted high risk for down syndrome
Reververse A flow

Was looking to see if anyone had had these three risks and what the general outcome was.

I know I probably should have added to an existing thread rather than starting a new one but couldn`t find anything that fitted the situation.

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shangrila · 31/03/2009 14:56

Fluffycats

Has anyone mentioned Antenatal Results and Choices to you yet?

You can call and talk to someone there, it's non-judgemental and they really, really helped us at such a confusing time. Helped us to interpret/explain the tests we had and they had TIME for us.

Might be worth a go? www.arc-uk.org

All the very best

StarlightMcKenzie · 31/03/2009 14:57

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Ohforfoxsake · 31/03/2009 14:59

You were right to start your own thread. There's so much support on MN, and it is willingly given. I wish I was on it when I had my 'high-risk' scan, but I didn't and now I know what a comfort it would have been at the time.

Perhaps start a new thread with a more specific title? As has been said, people do start threads worrying about a 'high 1:800 risk' or whatever (no belittling those, just illustrating).

It is a scary time, and if you have no experience or knowledge, all the more so. So don't feel as though you can't or shouldn't seek support and advice, it is what MN does best

When will you get your CVS result?

busierbee · 31/03/2009 15:57

Fluffy - those three things may mean baby does and may mean baby does not - they are only ever what they call soft indicators. The waiting is awful but you have a high chance things will be fine. If once you get the result you want to 'talk' to any of us - those who have kept babies with downs and those who have not - you will get every support. Keeping everything crossed for you
BB x

Original poster

fluffycats · 31/03/2009 16:09

Thanks everyone for your kind words. At the moment its just a case of sitting and waiting. Hopefully should get the results in 3 - 5 working days.

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busierbee · 31/03/2009 22:16

Well done fluffy for sticking with it, hanging on in there- the waiting game is no fun. You will get there and I have my fingers crossed for you. You have so much chance everything will be okay - much more likely it will than it won't.
BB x

linspins · 01/04/2009 21:25

Fluffycats, just wanted to add my support to you, sitting waiting for results is such a crap time. I think you may have read some/all of my thread, and hope it didn't add too much to your panic. Keeping my fingers firmly crossed for you, and wishing you lots of luck. Keep sharing with us here, you will find so much support, even if you just want to moan about waiting for results!
Lins xx

Original poster

fluffycats · 03/04/2009 08:36

Just a quick note, we got our preliminary results back last night. I cant believe how amazingly quick they were but its good news! All clear!! Yey! Cant believe how horrible this has all been and you never really know what your chances are. I asked about the lack of nose bone and she said maybe he just has a small or squishy nose! and said the reverse A wave wottsit is probably nothing. Which is crazy when you read anything online its all doom and gloom. Im so pleased though I could have kissed the woman on the phone. I still can`t entirely let myself believe that were totally in the clear. We still have to wait for the full findings but I was told that it is very rare that they will find anything wrong, so still keeping fingers crossed for that. It will take a little while to sink in and I think I will be rather nervous at the 20 week scan, but for now I think its time to take a chill pill!!

Thanks for all the support it has been a real help reading other similar stories and just to know there are others out there who know what you are going through.

xxxxx

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Sunflower100 · 03/04/2009 10:28

im so pleased for you. You sounded so anxious. Enjoy the rest of your pregnancy.

linspins · 03/04/2009 12:18

Fluffycats, I am SO pleased for you. That's great news, and I will keep my fingers crossed that the full report is just as good. Have a big glass of wine ribena to celebrate.
xx

messymissy · 03/04/2009 12:38

Fluffycats that's fantastic news... do something to celebrate and relax and enjoy the rest of your pregnancy.

busierbee · 03/04/2009 13:04

Ah relief for you now. Enjoy every minute of it - even the uncomfortable bits.
Bravo
BB x

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