amnio/cvs???
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Topic: amnio/cvs???
Posted By: freckle
Subject: amnio/cvs???
Date Posted: 24 August 2010 at 7:50pm
I've just talked to my MW and got my combined bt and nt scan results which I'm upset about... My NT scan was good (1.5 mm) which gave us a risk of about 1/1600 with my age (35)... however, my combined blood test results have increased my risk to 1 in 350... My MW said they don't offer the amnio to people with a risk of less than 1/200 but I think 1 in 350 is pretty high... my blood tests must have been pretty bad I guess to increase my risk that much... So I dunno what the difference is between the amnio and CVS and why one is choosen over another??? also does anyone know how much they cost? How long the results take?
TIA
------------- mum to 3 lovely girls :D
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Replies:
Posted By: kebakat
Date Posted: 24 August 2010 at 8:29pm
Mine increased dramatically with the bloods because I have some extremely low protein. I went along prepared for the amnio and the doc took a look at the scan and said it wasn't needed. Amnios come with their own set of risks and could take up to 4 weeks to get the results.
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Posted By: freckle
Date Posted: 24 August 2010 at 8:40pm
I just wish I hadn't had the freaken BTs now! cos the NT result was good!... but now I feel like I have to know cos I'm just freaking out... so did he say that to you after doing another scan?
------------- mum to 3 lovely girls :D
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Posted By: mylilmosaic
Date Posted: 24 August 2010 at 8:58pm
Hey Freckle
Try not to freak out too much. We have just been through the ins and out of this. Our combined results came back as increased risk for Trisomy 18, our result with the bloods added was 1/150. We were referred to a fetal specialist at the hospital and essentially I think a CVS has to be done by 12/13 weeks. A CVS is where they put a fine tube in through your cervix and they take a tiny piece of your placenta to test. Whereas the amnio is a needle that goes in though your tummy and takes a sample of amniotic fluid which they test.
Anyway the risk of miscarriage for an amnio is 1/100 so for us we decided to wait and have another scan at 16 weeks and if there were any markers at that scan we would have had the amnio. Our scan was fine and bubs was looking great, so this meant our baby is less likely to have T18.
It really is a personal thing as to what you would prefer to do. For us we felt the risk was higher that we might miscarry from the procedure. We have since had our 19 week scan and baby is still looking great.
I can't tell you what an amnio would cost, but I would have thought if you were referred to the hospital by your midwife then it would be free, Im not totally sure on that though.
HTH's
------------- http://lilypie.com">
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Posted By: kebakat
Date Posted: 24 August 2010 at 9:14pm
Yeah, I had a scan with an ob and he said nah your baby doesnt at all look like a downs baby but it wasn't really that which concerned me it was more the spina bifida thing but he checked that out and said it was all good. If your MW is cool you could always see if she can send you off for a "i've had bleeding" scan and while your there ask if they can check bubs again for any signs.
There are additional risks with an amnio if you are rh neg and partner is rh pos. Which is what we have. So you need anti d etc after that
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Posted By: tessie
Date Posted: 24 August 2010 at 11:23pm
I had an Nuchal Translucency Screening test come back as 1mm, was given something like a 1:35,000 ratio. Maternal Serum screening test gave me a good result also around the, 1: 1,500 mark. Anatomy scan came back with 3 soft markers for Trisomy 21 (Downs Syndrome). Ended up being given a 1:20 ratio for my son having Trisomy 21 (I'm 23 and previously concieved a baby with full T18, the T18 went undiagnosed until 32 weeks when I went into premature labour. Ultrasounds had all come back with a good result). My son how ever is perfectly healthy and turned out that there is absolutely nothing wrong with him. You need to remember that the Nuchal and Serum are just screening tests. They can cause a lot of panic and stress for absolutely no reason.
A CVS can be done a lot earlier than an AMNIO. Basic FISH results for both are usually available within 48 hours. Full results take 2 weeks. An amnio is as risky as those who perform it (eg: if you have one find out how many they perform a year, don't go with someone who has only performed 7 or so during their whole career. Go for someone who is the 50+ a year catagory).
You'd think an amnio would be free with a referal from a midwife. If your unsure about anything maybe approach another midwife for advice, or request a referal to see an OB. I researched my facts, and made demands. Nothing wrong with that if it brings you peace of mind.
Goodluck, and wishing you all the best.
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Posted By: freckle
Date Posted: 25 August 2010 at 8:20am
Thank-you all for your responses.... I am really trying to stay calm but tbh it's not working well... I really just want to have an amnio to ensure all is okay.... I know my results are classed as low risk but only just... My MW is contacting the lab and the hospital this morning to see what there thoughts on my results are...
Appy - how long did you have to wait for your referral to a fetal specialist?
Kebakat - yeah I was thinking about asking her for another scan...
Tessie - thanks for telling your story it is reassuring to hear your 2nd child was fine and I am sorry for your loss
------------- mum to 3 lovely girls :D
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Posted By: mylilmosaic
Date Posted: 25 August 2010 at 8:36am
Freckle my midwife rang the hospital and they contacted me the next day and we had an appointment within two days (I was about 13 weeks at this stage). That initial appointment was to see the specialist who then gave us our options which were either to have an amnio at 15 weeks or to wait one more week and have a scan at 16 weeks and decide from there.
Im pretty sure it is all free if you are referred to the hospital, certainly our scan at 16 weeks was.
------------- http://lilypie.com">
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Posted By: freckle
Date Posted: 25 August 2010 at 10:23am
That's good they didn't make you wait too long! I'm glad your scans both came back all good
I just heard from my MW and she has referred me to fetal maternal medicine so we will hear more this arvo.... I am really such a stress pot I can't see me relaxing without knowing for certain
------------- mum to 3 lovely girls :D
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Posted By: clover
Date Posted: 25 August 2010 at 10:38am
Oh freckle, I'm sorry you are going through this! I've no experience to offer you but will be thinking of you this arvo.
------------- http://lilypie.com">
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Posted By: fire_engine
Date Posted: 25 August 2010 at 10:45am
------------- Mum to two wee boys
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Posted By: amme_eilyk
Date Posted: 25 August 2010 at 11:16am
tessie I am so sorry for your loss T18 is a nasty disorder. But I am so happy for you that your son is healthy.
freckle have you thought about what you would do if your baby tested positive for downs? it is really important that you discuss this with dp while you are considering having the test, as this will help you decide if the risks of miscarrying from the test are worth knowing the result. also you need to be prepared that the results of the test will force you to make a decision one way or the other. if you and your dp decide that having a downs baby is not something that you can handle then it may be worth you having the test even though your risk is low. but if you and dp decide that having a downs baby is something that you can handle then the risk of the test may be higher than is worth it.
excuse the long post but its really important to be prepared for having to make a decision, as your initial reaction is just to know.
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Posted By: freckle
Date Posted: 25 August 2010 at 1:38pm
amme-eilyk - thanks for your thoughts... we did discuss this before getting UTD and although many may disagree with us we always said we wouldn't continue with the pregnancy. We are well informed on DS with DH having a brother with DS and I have worked with special needs kids for years and I truly don't believe I have the strength and patience I have seen in the parents of the children I worked with... I truly hope that doesn't offend anyone as it is such a personal choice. But in saying that I do find the amnio very scary in that is gives a definite answer and forces us to make the decision....
I dunno maybe I am over reacting, I mean I am considered low risk with my results but I can't stop thinking about how much the BTs changed the initial scan. I did just read an article which said that 83.3% of trisomy 21 cases had nuchel folds above the 95th percentile which I guess is a major positive for me as the NT thickness was about the 35th percentile... argggghhh so doing my head in
------------- mum to 3 lovely girls :D
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Posted By: Caro07
Date Posted: 25 August 2010 at 1:58pm
Thinking of you Freckle We were given a high risk (1/250) from just the nuchal scan with our 2nd DS. Our risk went down with the bloods and we decided against amnio but can totally understand what you mean about worrying and stressing. An amnio might give you peace of mind and if you feel that the benefits outweigh any risk, then maybe it is the way to go.
I hate to hear of others going through this as I remember how stressful it was for us and how that stress didn't really dissipate until DS was born. Hope all goes well, whatever you decide.
------------- Caroline, SAHM to 2 boys, S (4 years old) and J (2 years old)
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Posted By: thmprs
Date Posted: 25 August 2010 at 4:17pm
Big Hugs Freckle that is a really hard think to go through, and i think I would be the same even though you know the risk is still low you wont stop thinking about it.
------------- http://lilypie.com" rel="nofollow">
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Posted By: Ceres
Date Posted: 25 August 2010 at 4:58pm
Huge big hugs Freckle, this is something I think that would send nearly all of us into a complete spin .
As the others have mentioned, amnios are normally done later in pregnancies than the CVS test. The risk of miscarriage following one is, depending on the person who does it, somewhere between .5 and 1%.
I personally think if the not knowing is going to stress you out, then it's probably a good idea to have it done. A risk of 1/350 is still incredibly low but having that confirmation that all is okay will save you stressing for the rest of the pregnancy. And maternal stress is just not a good thing all round.
I hope you hear back really soon and are able to get the ball rolling for your peace of mind.
------------- http://lilypie.com" rel="nofollow"> http://lilypie.com" rel="nofollow"> <
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Posted By: amme_eilyk
Date Posted: 25 August 2010 at 5:50pm
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaabaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
thats a visual representation of your risk level of downs. that is 350 letters. 1 letter in 350. or 0.29%
aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaabaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
thats your risk level of a miscarriage 1 in 100. or 1%
so it just comes down to whether knowing is worth it for you.
(by the way I totally dont judge you either way. It is a really tough situation to be in and I dont know what I would do if it came down to having to make the decision. it must be even more difficult for you considering that you already have kids as you need to take their needs/life into consideration as well)
edited cause i broke the page and made it wide
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Posted By: Emmecat
Date Posted: 25 August 2010 at 6:27pm
Posted By: tessie
Date Posted: 25 August 2010 at 11:42pm
Perhaps do what I did, Nuchal, Maternal Serum, then full anatomy scan at 20 weeks? Once you have the results from the anatomy scan you may be able to make a more informed decision? (Eg: based on wether or not they find any hard or soft markers).
I could offer you all the advice under the sun but what worked for me during my experience may not necessarily work for you.
Keep us updated as to how it all goes. Wishing you all the best.
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Posted By: freckle
Date Posted: 26 August 2010 at 12:52pm
Thanks again guys for all your kind words !! I just heard back and I can't get an amnio through public as I'm considered low risk, so we have to go privately which is gonna cost $800... I have booked in for Monday and now I'm utterly stressing about whether I'm doing the right thing... it just sucks that I could be risking miscarrying a perfectly healthy baby to give me peace of mind But then again stressing for the next 5 and half months can't be a good thing either....
------------- mum to 3 lovely girls :D
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Posted By: tessie
Date Posted: 27 August 2010 at 3:38pm
freckle wrote:
Thanks again guys for all your kind words !! I just heard back and I can't get an amnio through public as I'm considered low risk, so we have to go privately which is gonna cost $800... I have booked in for Monday and now I'm utterly stressing about whether I'm doing the right thing... it just sucks that I could be risking miscarrying a perfectly healthy baby to give me peace of mind But then again stressing for the next 5 and half months can't be a good thing either.... |
No matter what decision you make you will always question yourself as to wether or not you have made the right choice. Wishing you all the best for Monday, and remember to rest, rest, rest!!
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Posted By: mummyofprinces
Date Posted: 27 August 2010 at 3:47pm
Thinking of you hun... I am assuming they know about the family history???
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Posted By: karenb_chch
Date Posted: 27 August 2010 at 3:50pm
Hi Freckle, Tough choice, but you've got to do what feels best for you - as you said, stressing for the next 5 1/2 months would probably be worse for all. Good luck for your amnio.
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Posted By: freckle
Date Posted: 27 August 2010 at 5:50pm
Yeah Tessie your so right, I'm change my mind every hour about whether it's the right thing to do...It's nothing to do with the money cos who cares its just money... but it is so scary that even though it's such a small chance it could show a prob it really forces us to make a decision...
Yip Mel the MW told them bout DFs bro but doesn't make a difference unfortunately cos only a very small percentage of people with DS have hereditary link (it's the translocation type)...
Thanks karen
the other thing that is bugging me is that apparently when they work out ya ratio they factor in your weight cos the heavier you are the more the hormones are naturally lower... so my MW copied the front page of my noted from my last lot of notes with DD2 at which time I was 12kg lighter she never weights me and forgot to tell her so the whole thing has been calculated on the wrong weight which can apparently make quite a difference...
------------- mum to 3 lovely girls :D
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Posted By: mummyofprinces
Date Posted: 27 August 2010 at 6:01pm
Well they should recalculate!!! Can you demand the do it with the correct information?
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Posted By: freckle
Date Posted: 27 August 2010 at 6:05pm
maybe I should ring the lab? I haven't told anyone yet I've just been reading about it cos I didn't really think it would make that much difference until I looked it up... damn the weekend !
------------- mum to 3 lovely girls :D
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Posted By: jonty
Date Posted: 23 November 2011 at 4:37pm
Hi guys, I wanted to share my story as I went through CVS testing and found stories on forums really helpful and informative.
At 12 weeks DH and I went for our scan. We already have one beautiful healthy daughter so were expecting all to be well. About three quarters of the way through the scan I saw the nuchal measurement and knew something wasn't right. They measured it between 2.8mm and 3.5mm with 3mm being the measurement they thought was the most accurate. Around 2mm is normal. Combined with the blood tests and other factors such as age etc (I'm 30) I was given a 1:65 risk for downs which is extremely high. For my first baby I was given something like a 1:3000 risk.
My husband and I were devastated and immediately began to fear the worst. The hardest thing was the lack of information - I had the basics on the CVS test but my midwife didn't seem to know the answers to my questions. We spoke to her on Wednesday and had to wait until Monday to see the Maternal Fetal Medicine Team.
The staff at the hospital were amazing - really caring, sensitive and answered all our questions straight up. I'd always thought that I would keep a baby with downs syndrome, in fact I may have even been a little judgemental of people who chose to terminate. However it's so different when you are actually faced with that situation and we were considering ending the pregnancy if our results came back positive.
If you are around 14 weeks or less, you can have a surgical termination (a normal abortion) where you go into the day clinic. If you are over 15 weeks you can have a medical termination - where you go into the hospital and take some pills to bring on labour. The specialist told me it was like having a miscarriage - it is not like a delivery.
Waiting for our CVS appointment and the results was agony. The whole ordeal was easily one of the worst experiences of my life. We tried to cope by distracting ourselves. One of the worst moments was when I came home at night and found DH holding DD asleep in his arms, sobbing uncontrollably.
The CVS itself was not too bad. It only took a few minutes and was more uncomfortable than painful. The whole thing was incredibly emotional though and after it was done I found myself in the hospital chapel weeping and praying, despite not being overly religious.
Someone up there was looking out for us - our results came back clear. We are really relieved and happy, but still shattered from the whole gruelling experience. We organised our own counsellor because we wanted to be prepared for the results and also process all the emotions we were feeling. The hospital does not offer counselling unless a problem is found.
Hopefully now we can just relax and enjoy our pregnancy. My thoughts and prayers go out to anyone else who has gone/is going through this.
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