To have the cvs or not with a 1 in 100 chance

(21 Posts)
RacheyO Thu 20-Feb-14 16:31:49

Someone please help me, I am struggling beyond belief. I am booked in for a cvs tomorrow at kings in London. Yesterday I was given my probability as 1 in 100 after my combined screening with an Nt of 4.4mm. I am 25 with 2 healthy happy girls already. My chance of miscarriage is slightly higher following the procedure than the chance of ds. Harmony testing was mentioned but my husband is desperate for results now (as am I to be honest). I just don't know what is the right thing to do. I will be scanned first and will ask them to check for the nasal bone which wasn't checked on Tuesday.
I hate I am in this position and the many other women like me but I am petrified of anything happening to baby and also desperate for answers.
What did everyone else do..... Please please someone tell me what to do x

Boltonlass1972 Thu 20-Feb-14 17:03:02

Ok. The question you have to ask is would you be prepared to terminate based on the results. If no, you would find more out through more detailed scans and accept baby whatever. Amnio carries less risk doesn't it? We waited past the stage of cvs opportunity but unfortunately baby died before 15 weeks meaning I didn't have to make that choice. (Don't want to upset you..just wanted to show I'd been in the same boat) Personally I wouldn't have had the cvs due to the invasive nature and therefore risk, but everyone is different..no one can tell you what you should do. It depends how important it is to you to 'know now'compared to the risk to life. You would only have a wait of a few weeks until an amnio was possible (but that's a risk of 1 in every 200 pregnancies I think?) I hope you come to a peaceful decision. It has to be yours in the end..anyone else pushing you for it will make you blame yourself if it causes mc because you 'did'it to your body. Chance of mc is 1 in 5 in a normal pregnancy anyway. Lots of love. [Hugs]

RacheyO Thu 20-Feb-14 17:23:18

I feel in my heart that I would keep the baby regardless of the outcome unless there was a severe life limiting defect, I fear my husband feels different. He is also not dealing with this very we'll and believes he needs all info to make a decision rather than answering to what ifs? Basically I have the same probability of either outcome, tomorrow I will be 13 weeks 6 days so even when they rescan me the nt may not be accurate now. I am hoping that they tell me the nasal bone is there which I believe May make me not go through with procedure, because am I right in thinking the nasal is not present with ds. I am so sorry to hear you lost baby. Nobody has mentioned amino,only cvs and harmony testing x

CrispyFB Thu 20-Feb-14 17:51:42

Personally for a 1 in 100 I would wait it out with Harmony, but then I waited it out for 20 long and stressful weeks for a 1 in 34 pre Harmony, so obviously I'm coming at it from the point of view of somebody who would only do invasive testing in extreme circumstances (e.g. a positive Harmony, or really high for a fatal issue). I'd have jumped at a two week wait back then!

Something to consider is would you forgive yourself if you lost the baby? I knew I would not, which is why I didn't do it. Other people feel it's a risk they can take.

I do know of several people - including friends - who have lost the baby as a result of invasive testing, and that has probably swayed my decision too. To those people, it's not a statistic.

Everybody is different though, we all have our personal risk limits and it is such an individual choice, there is no right or wrong answer really. You're out of time unfortunately now, but often I suggest "living with" each choice for a day or so, convincing yourself you've fully committed to it, and seeing which feels like the better one.

Good luck making your decision!

RacheyO Thu 20-Feb-14 18:44:11

Thank you for your advice,
If we had already made our minds up it would make this decision far easier the problem is neither of know for sure what we would want to do. I feel awful for feeling this way because obviously I already love the baby. I want to wake up and this all be a terrible nightmare.
X

zippyswife Thu 20-Feb-14 19:30:10

Rachey I was in a not too dissimilar position. My risk was 1:151. At our hospital the 'cut off' for high risk was 1:150. So technically we were low risk. We were however offered all tests. I wanted to keep the baby regardless of the outcome, while DH felt differently. I spoke to a designated midwife about the tests and came to the conclusion that as I would have kept the baby regardless of the outcome the tests were of little consequence. I just couldn't have dealt with the risk of miscarriage from the test when I would have kept the baby either way. I was also advised that severe abnormalities are detected at the 20 week scan. So I just waited it out. I stressed a bit up to the 20 week scan when I was told everything was good. Then I pretty much relaxed for the rest of the pregnancy. DS is 18 months now and perfect! It's a tough decision I know. So wish you the best of luck.

minipie Thu 20-Feb-14 19:38:59

Hi Rachey, I too was in a similar position, 1 in 102 for Downs. Harmony wasn't available (this was 2 years ago) or at least I didn't know about it.

I went for a second opinion private scan at the Fetal Medicine Centre in Harley Street. They do a much more thorough scan and the same blood tests again. These came back with a similar Downs risk but they also said I had a 1 in 40 risk for Edwards and Patau syndromes. This is what decided me to have the CVS as I knew we would terminate if our baby had either of those syndromes. Have you been given a risk rating for Edwards and Patau?

I was also told that while the average risk for a CVS is 1 in 100, the risk at busy London hospitals is much lower because they do the procedure all the time. And I had anterior placenta which also reduces the risk as it's easy to access. So I reckoned that overall the CVS risk for me would be quite a bit lower than 1/100. Do you know where your placenta is (it may say on your scan form?)

It's a very difficult decision but these are the factors that helped me decide to go for a CVS. I had it, it was fine, results all came back negative and DD is now a healthy 15 month old.

I have to say that I think I would have waited for the Harmony if it was available however... but it would have been a very very hard wait.

Best of luck with your decision.

RacheyO Thu 20-Feb-14 20:07:59

I know I'm going to go to kings even just for the thorough scan, I will make my mind based on those findings. I will ask the sonographer about the placenta and also the nasal bone. Reading up on that, although not definitive has a fairly strong correlation. Doing more research on harmony there's apparently a 1 In 30 chance no DNA will be in the blood samples which would obviously delay the results even further.
I am praying I go tomorrow and they say a mistake was made and all is ok.
No risk rating for them specifically yet.

Thank you all for your support and suggestions

minipie Thu 20-Feb-14 20:15:17

Oh yes Kings is the top place - same people as Fetal Medicine Centre, they look at everything. They will tell you about Edwards and Patau risk too. Good luck, fingers crossed for you.

grobagsforever Thu 20-Feb-14 20:41:44

The risk of miscarriage from cvs os overstated. Most evidence suggests it's more like 1/500. With a 1/15 risk I opted for cvs, I think with a 1/100 I would have gone with harmony. Best of luck OP, it's a horrible shock you have had.

MrsT2007 Fri 21-Feb-14 12:56:04

My consultant had a really low cvs miscarriage rate, he told me 1:500 was the norm too.

If it helps, I had 1:11 and baby did gave real problems so we had TFMR.

Because if previous history following risk at next pregnancy is always higher but the lovely nurses told me that without that, it'd have been 1:10,000. It was given as 1:245. I decided not to have cvs as nuchal and bloods were spot on, unlike before.

It's do hard weighing up odds. Go with your gut feeling xxx

RacheyO Sat 22-Feb-14 10:46:22

Hi everyone, just to let you know we went ahead with the cvs, it was horrible. The doctor assured that most miscarriages occur instantaneously so we took a sigh of relief when she showed us baby's heart beat. Obviously there is still risks after but now it's just to wait till wed for results.
Thank you all for your support and help again x

Chompee Sat 22-Feb-14 13:56:48

Hi Racheyo
I have read your post which is very similar to mine. I'm glad that all went well with your CVS. My heart goes out to you with the decision that you had made. It's hard. I had my NT scan and the results came back 1.20mm and combined blood results were 1 in 130. The NHS cut off is 1 in 150 which I'm sure you know. My results are not too bad but my age of 38 yrs doesn't help and also my previous pregnancy was severely Down's syndrome which ended with a termination. I am now very worried and don't know wether to have a amino or Harmony test. I'm scared that if all is ok and I had a miscarriage I would never forgive myself. I had a CVS with my previous pregnancy which was horrific and wouldn't want to go through again. Do you have any thoughts on my situation and any advice. How did you make up your mind to have a CVS?

Amanda xx

RacheyO Sat 22-Feb-14 16:11:35

I honestly do not think I could ever go through a cvs again. I struggled with my anxiety the whole day yesterday which made the situation a whole lot worse. I think harmony testing is the way forward. Although you can't escape the worry of if something is wrong but at least you do not have the added pressure of miscarriage (unnecessarily). My husband has barely given an opinion, I think through fear of upsetting me. I made him tell me during the ultrasound if he wanted the cvs, in which he said yes. I think it's outrageous they don't do harmony on Nhs yet, I've been told apparently in 2015 it will be available.
The doctor asked us, would you find it harder to have a baby with downs,or miscarry a baby without. And for that moment in time we felt the first option would be harder.
Reading up on cvs, they do say that if miscarriage happens it was probably going to happen anyway if that helps. I found it easier having someone to tell me what to do xxx please let me know what you decide and fingers crossed for you

zombielady Sat 22-Feb-14 21:04:15

Hi. I had a cvs last year after an nt measurement of 3.8 but overall odds of 1 in 2 for downs! To be honest, the thought of miscarriage hardly entered my head as I was preparing myself for a bad result having not heard too many positive stories from odds like that. We had decided to terminate as we already had a little boy and tbh mentally I didn't feel I could cope with a special needs child. Happily we got good news and she is now a healthy happy 6 mth old. Hope you have good news on wed. Fingers crossed for you xxx

Monten Mon 24-Feb-14 17:24:44

Just wanted to say hope you get good news on Wednesday with your results RacheyO. I've been there recently and I know the wait is interminable. Sending good thoughts

RacheyO Mon 24-Feb-14 21:18:25

Hi monten, if just read your thread and my heart goes out to you. I'm just not sure I am as strong as you sound, and many others on that note. I'm not coping all that well just anticipating bad results.
Zombie lady, I am so pleased you got good news, that fills me with hope, which worries me also.

Thank you lady's xxx

Chompee Mon 24-Feb-14 22:15:47

Racheyo

You have done so well and have been so so brave with having the CVS. I've opted out I have had an intergrated blood test today at my local hospital which is around 93% accurate with the results it should either give me a better result than 1n 130 or a worse result if I get a better result I think I will draw the line there and leave be. I'm so hoping for a better result. I wish you all the luck in getting a good result in your CVS. Please keep me posted xx

Amanda

RacheyO Wed 26-Feb-14 11:26:42

Hi everyone, I got my results last night. It's good news baby is all ok (for the first set of results back) we are over the moon. And it's been confirmed we are having a baby boy : ) xxx

Rachael

CrispyFB Wed 26-Feb-14 16:21:10

Very pleased to hear all is well! smile

minipie Wed 26-Feb-14 17:38:37

oh hurrah. The stats were always in your favour but it's great to have it confirmed isn't it. Congratulations on your boy smile for me it was a nice compensation for having the cvs that I got to find out the sex early.

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