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Original poster

1:45 risk - just got the call - not sure what to do...

19 replies

ginghamspider · 23/05/2011 22:08

Hi, Just had a call to say my risk after nuchal and bloods is 1:45 and they're made me an appointment tomorrow. I am at the Norfolk and Norwich but wondering about going to London to the Fetal Medicine Centre if I decide to have invasive tests. I think at the moment I am more likely to go for tests - have 3 young children and want to be prepared as possible. Any thoughts? Thankyou.

OP posts:
Original poster
ginghamspider · 24/05/2011 09:49

Just bumping myself!

OP posts:
manitz · 24/05/2011 10:22

hi don't want you to be ignored but not sure if I'll be much help. I dont know how confident you are with your hospital but I have previously gone out of my PCt for a heart scan (to speed it up). Then I had to have a late termination - at a hospital within my pct but not mine as needed the injection. Got all prepared for the termination to turn up and find out they would not accept the results from the cardiac scan and made me have another and go away for a couple of days to go back for the termination another day. A lot of my notes were missing (even the faxes from my own hospital within the same PCT) and it added a lot of complication. Obviously you will need to organise childcare etc and the travelling when you are tired after a cvs may not be ideal. I was told to put my feet up for 24 hours. Your odds are high risk but you have a 88/90 chance of a healthy baby and wouldn't want to risk a miscarriage. There is a lot to be said for continuity of care.

My hospital offered me a detailed scan before my cvs which I didn't need that time (2nd termination) as the baby was clearly ill and I needed to find out as soon as possible. However I have just had one with this pregnancy and it was really helpful, the consultant went through all the possible soft markers for downs, edwards, turners and patau.

Also if you haven't already it's worth looking at the downs syndrome website it really helped me to focus my decision. Although I chose to terminate that pregnancy it gave me a view of what it is like to have a child with downs syndrome - a more positive picture than the steriotype I felt.

I hope all goes well for you. x

KTM36 · 24/05/2011 11:01

My risk came back at 1:120 which is classed as high risk in my trust (calderdale). We decided to have an amnio, done 16th may, which was fairly uncomfortable and not without problems, they had to go through the placenta which meant my sample was heavily blood stained. This meant that they couldn't give me quick results for Downs so we are having to wait the full 14 days which is agonizing. I am still pleased that we decided to have the test done as we would prefer to know either way and be prepared but needless to say the wait is taking its toll, sleepless nights and high blood pressure but hopefully it will soon be over. My advice would be to make sure that you are happy with your rationale for wanting the tests, the team that did my tests were all very supportive and informative. Good luck with whatever you decide gingham spider.

Original poster
ginghamspider · 24/05/2011 11:35

Thanks very much. We would prefer to know too. Haven't decided re termination - taking that one step at a time. But have 3 young children and want to do the best for the family we already have which for us means at least being as prepared as possible for whatever outcomes. Good luck to you too.

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lktoday5 · 24/05/2011 16:15

Hi - my risk came back as 1:20 and 1:4 on bloods alone. I would absolutely and completely recommend the London Ultrasound centre - I cant speal highly enough of them (all, the whole team are brilliant). After an extremely stressful and complicated journey (as my gynaecology is unusual) I got the all clear, but i was VERY glad I went private, was the best money I ever spent. And the consultant there invented CVS so you cant get much better than that! (And no, Im not on commission!)

Please feel free to PM me as well if you want to ask anything or need any other help - I drove myself nuts reading forums and googling ...

ShowOfHands · 24/05/2011 16:24

If you're going to the N&N, they have fetal abnormality specialists and one in particular who I know of who specialises in ultrasound, cvs and amnio. Here are his credentials. I do know of people who have been through the system of testing at the N&N and the care is utterly excellent. It's a modern teaching hospital (as I'm sure you know) and the staff in this area are exemplary.

misty0 · 25/05/2011 11:32

Hi love,

Sorry your stuggling with this xxx

Cant advise you about hospitals ect, as i went to the JR in Oxford for my CVS. I has a 1:3 for DS. Terminated last month SadSad

I can tell you i didnt hesitate on the CVS, i know my odds were bad, but i would have/will have again even if they were much lower. Like you i wanted to know .....

The CVS itself was fine. Dont worry. I REALLY hate needles and i coped! One small sharp pain, like you'd espect from an 'injection', and then it was all over within a few moments. I was laying there wincing and it had already finished!

Please keep talking here if it helps - loads of love and support to be had on this forum hun. Let us know how you get on xxxx

MotherPanda · 26/05/2011 13:37

1 in 45 sounds very hopeful in my opinion, hope it all works out ok for you. :)

thebestisyettocome · 26/05/2011 13:44

I had the scan and was told things looked fine. Everything was.

Please try not to worry too much. This happened to me at a very stressful time (DH very unwell and in hospital). Thankfully it all seems like such a long tim ago now...

Original poster
ginghamspider · 26/05/2011 14:56

Hi - thanks for your support. I went to the local hospital, in Norwich and spoke to a great midwife who went through all the results and was the right balance of reassuring and realistic. They offered me the CVS there and then if I wanted and after an extra chat with DH I decided to have it - one more step to knowing either way. The consultant was really good - he and two colleagues do 100s a year so very experienced. DH waited outside - we had our very lively 3 year old with us and I though having her in the room jostling the needle would NOT be relaxing so very sweet student offered to 'be DH' and hold my hand but the whole thing was very quick and not really uncomfortable - just weird. The nuchal was 1.4mm but the bloods weren't good so still very anxious and waiting for the initial results - no nails left and moments of tears! Really appreciate your comments.

Misty0 - very sorry for the decisions you have had to make. Very torn at the moment and trying to think one step at a time but not easy is it?! x

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manitz · 26/05/2011 22:25

hope your results are good. i would also have had the CVS - I think my post read a bit strangely but I think travelling would have been hard for you. Your hospital sounds great, you have to take this step by step to a certain extent as it doesn't seem so massive then. I hope you don't need to make any horrible decisions. x

Carlyftm · 27/05/2011 17:59

Hi, How are you holding up? I just want to share my story with you it might give you a bit more hope!

I have been through this myself this week, had my nt scan on monday and they picked up 2 markers for DS, by the time my bloods came back the next day I was given 1:2 odds; I was completely devestated and convinced myself that my baby had DS. I had the CVS the same day, got my quick results yesterday and they were NEGATIVE for DS, edwards and pataus. I have to wait up to 2 weeks for the full screen results but im a million times more hopeful that baby is going to be ok!

I sincerely hope you get good results and everything is ok!

Carly 12+6
XxX

Original poster
ginghamspider · 27/05/2011 18:12

Hello - huge relief! Hospital called today and all good re Downs, Edwards and Patau. Downs was their big concern so am less anxious about the full results. Was in a Tesco car park where I was due to collect money for Alzheimer's Society and got the call as I arrived. Phoned DH and burst into tears - so so glad! Composed myself for 20 mins and was a very smiley collector! So pleased to hear your results too Carlyftm - fantastic and with such worrying odds too. Really delighted for you!

And thanks so much for all the help and support. MN at its best!

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Carlyftm · 27/05/2011 18:20

Thats fab news so happy for you! yay :) - and thanks its been an emotional week!!

( I wouldnt leave the house while I was waiting for the call, didnt want to be a blubbering mess in middle of morrisons lol)

XxX

thebestisyettocome · 27/05/2011 21:08

Great news. I am so pleased for you!

misty0 · 27/05/2011 21:58

Fantastic Grin Wonderful news xxxxx

Original poster
ginghamspider · 28/05/2011 11:29

Thanks all - I didn't want to leave the house either but my mum died with Alzheimers and I felt it was the one thing I had to stick to. DS was getting a certificate at school that afternoon too and would have gone to that although so relieved to have the good news by then so I could concentrate on the little man!

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drivingmisscrazy · 28/05/2011 20:20

great stuff gingham and carlyftm - delighted for you (I'm the person on the 1:11 thread that's probably been hovering as you click on this - also clear!); feel strongly that I should check in here from time to time and offer others going through the same thing the kind of absolutely wonderful support that was offered to me - you know who you are!!

KTM36 · 08/06/2011 16:07

Finally got my amnio results, all clear so I can start to get excited again!! So pleased for all the others who have had good results.

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