A real concern or not?

Hi Ladies,

Not sure what I am really after here but I guess just some opinions on what I have been told today.

I took my 12 week NT scan into my OB this morning and he was telling me that my risk of a downs baby is a medium risk.
It was 1:350 and I am 35 years old. The background risk that was expected was 1:227 so I completely aced it in my opinion. I mean it's not even a 0.3% chance.

My OB however was pushing for me to have a CVS or Amnio done. He explained the procedures (didn't however mention the risks of miscarrying a perfectly healthy baby) and even explained down to the fact that if the baby has downs and I chose to terminate that I would have to birth the baby. I asked a few questions on risks etc and whether he actually recommended I have the procedure which he did but it just doesn't feel right. I felt like I was being scared into having a procedure done.

What really doesn't make sense is no one else, no the OB that calculated the risks, not my GP thought they were bad. My GP even told me that the result was good.

Would anyone think 1:350 high enough to do an amnio? I understand that at the end of the day it's mine and my DH's choice, but now it also has me wondering if I can trust the professional opinion of this guy.

Any opinions are gratefully accepted.

BubbaT

I guess the ultimate question is whether you would terminate if you discovered the child had Downs. If not, then is further testing necessary??? If so, then if you decide not to test and the child has Downs, are you okay with that? Only you can answer those questions.

Best of luck x

Honestly N2L I don't know whether I would terminate or not. Please no one have a go at me for not knowing what I would do.

I just feel like I am being pressured into having a procedure that has a higher risk than the potential issue is all

If anyone has a go at you....well...they better not, is all (I will get my cranky pants on).

I don't know, but maybe you feel pressured because it is a decision you (understandably) don't want to make. Maybe do a little more research the risks involved????

Please don't take my word for it but I remember reading that amnio isn't as risky as it once was....

hard one.

I agree with n2l, research as much as possible and then make your decision. ultimately its up to you and what you feel comfortable with.

fwiw, my sis had 1:200 chance of downs and wasn't even asked if see wanted an amino,so I do think.it depends on your doctor too.

do what feels right. hugs, its not a nice situation to be in.

If anyone has a go at you for not knowing what you would do - well lets just say they would have to go through me first!

Ultimately though it comes down to what risks you are willing to accept. Before deciding it could be worth asking your OB his personal statistics on miscarriage following these procedures. It may be that he is very experienced and as such the risks of miscarrying could be smaller (I don't know, but I would imagine experience would make the procedure less risky). Ask for a 2nd opinion if you feel you need it. Don't feel pressured because you have time to make this decision just now. I hope you find some peace and make a decision you are happy with.

Don't let them pressure you, hun. I agree with you - it's not like a CVS or amnio has no risks either! Look up the procedures and the risks from having them conducted and compare that to the risk that your baby had Downs and see what you feel more comfortable accepting.

We all seem to take for granted that there are extra procedures and tests out there and are not reminded that none of them are risk free. I saw a program the other day when a mum-to-be lost her perfectly healthy baby at 18 weeks because of an infection caused by an amnio. Sure, the risk that will happen is pretty low, but is it any lower than the risk of an issue with the baby (and then not even being sure what you would do if there was an issue)?

With the risks weighed up, ask your ob to justify why they are asking you to go ahead. Give them the stats.

theres a 349 chance that your bubby wont have a disabitly, theres a risk of misscarriage with the amnio/cvs.
if it were me, and the results wouldnt change the otucome of the pregnancy, id wait till the 20 week scan, if theres markers for DS then i'd think about the amnio
:) its a tough one hun, wishing u allt he best with your decision

We had our own cut off for choosing an amino/cvs or not. Which was around 1:250 or 1:300 T21 risk, as the statistical risk given for m/c after amino is about 1:250. After the losses we had, we didn't want to risk a m/c. If you choose a good consultant OB who does them all the time, the risk should be lower.

We had a good result for both boys, so didn't want to take the risk. It was the 20wk scan we found out DS2 was sick and had an amnio a couple of weeks later. He was chromosomally normal but had a separate, fatal condition. The amnio was stressful and painful, but quick and I just breathed through it.

If you're happy with the 1:350 risk, then I wouldn't do it just for your OB. You may want to have a scan at 16wks to check things like the heart before making the decision. Or you could choose to wait to the 20wk scan.

Also, with an amnio, they can check for spina bifida, which they can't with a CVS, if it comes to a choice.

Btw - what was the NT measurement? According to the OB that did the NT on DS1, the blood work accounts for 10% of the result. So if the NT measurement is good but the blood work skews it, you may want to take that into account.

As for termination, if someone wants to have a go, I will not be happy at all. If you find out and choose to terminate in the next few weeks, a D&E is possible. It's when you get closer to 16-18 weeks that birth becomes the safer choice.

Everything is your choice. It's your body, your baby. We make the best decisions for our children with the information we have at hand. Take care.

Perhaps before you think about getting the procedure done you and your DH need to think about whether or not you would terminate if you found out your baby had Down syndrome. That is the real question. 1:350 at your age is a great 'number'. Any person, even a person with a number in the 1000's can be the 'one' who has the Down Sydrome child. If your answer to the question is that you would keep your baby no matter what then you don't even need to worry about having the procedure. If your answer is that you would make another decision then you need to think more about having the procedure done.

It is true that the risk has come down over the years and it is also true that the more experienced the person the better off you and your baby are in their hands.

For what it's worth - I have had both procedures and I had to make the hardest decision of my life in the end (with my first baby) and no-one should judge a women for the choices she may have to make.

I hope everything works out for the best. Use your instinct, that will take you far.

personally, I would not do the amnio or CVS ... the risks I have been told of amnio and CVS are between .5% to 1% chance of miscarriage - if that's correct, there would be a greater risk of harming a healthy baby than there would be of correctly detecting an abnormality.

so personally, that is not a risk I would be willing to take.

my views however are most likely tainted by the fact that even if there was a 100% chance that my baby had downs, I would still continue with the pregnancy - so the benefit of successful testing would just be about knowing sooner.

if I was considering a termination, then my views about the risks and benefits might be quite different.

keep thinking, chatting, mulling it over with your man etc. this is a big decision, and it's important to think through all the pros and cons, rather than letting anyone rush you either way.

:hug: hugs and support are available though, whatever you choose.

Gosh what a stress :grouphug:. Personally I find 1:350 good odds!

If you think about your class at school, probably 25 people, then that is 14 classrooms full of pregnant women with those odds and on average only one would have a child with downs. Another way to think of it is the odds of running into a random stranger who shares your birthday. Sometimes we find it hard to wrap our minds around odds when they are presented as numbers.

I can understand why the Ob has caused you stress, and why those procedures would cause anxiety too. I don't know the answer for you but hoping for the best. I hope no one judges you if you decide you would terminate based on a CVS or Amnio finding. :hug:

Thank you ladies for your advice and opinions, they all do help me greatly. I haven't even had a chance to tell DH yet as he is working with a difficult client today and I really don't want to discuss something like this over the phone. He knows we need to talk about the results tonight but that's about it.

Personally I wish I had just have had a scan and stayed clueless about any risk, but seeing as I can't do that I guess it's down to research and discussion between me DH and my OB. I am tending to think that I would rather see what they say at the 20 week scan and then make a final decision if there is any concerns at that scan. The OB didn't like that option but phooey to him, I think it's the only one I am going to be comfortable with.

Oh well guess I better go do some research so I have some facts I can offer DH tonight. Just once I wish I could do things the easy way.

Research is the best way. :hug:

I had a 1:200 risk with DS. No-one offered an amnio. They did know however from before the testing that it wouldn't have changed my mind.
You can ask for an earlier scan than 20 weeks (16 usually) to check for soft markers if you're still unsure.

i would definitely do some more research & don't feel pressured into doing either a CVS or amnio.

fwiw, this time i had a 1:291 risk of DS. the scan was pretty good & it was the bloods that pushed the result (just) into high risk. the dr who did the scan was very good at explaining everything to me & said the most important thing was not to panic as the results weren't really that bad. i spoke further with my GP & he was very consistent with what the Dr had told me. i chose to have a CVS because that is just me - i HAD to know and i would have been very uncomfortable waiting to find out. my DP thought it was a little crazy given that the risk of miscarriage was actually higher from having the procedure than the risk of DS (something else to consider).

when we went in for the CVS the doctor said to me that 'we're pretty sure everything is ok but you're here just be 100% sure?' which summed it up beautifully for me - that is what i needed to do to be comfortable. ETA: i rested for the rest of the day after the CVS & took it pretty easy for 24 hours. i was perfectly fine (so far & it was a little over 10 weeks ago now i think) & didn't have spotting or any bleeding etc.

i think it's very wrong for anyone to be making you feel pressured into having a procedure that comes with its own risks (although apparently largely dependent as well on the person actually doing the procedure).

:hug: do whatever you & your DH feel is the right choice for you.

For DS1 I had a 1 in 350 risk and I was only 27. I didn't even consider an amnio as I know for sure I would not terminate and i didn't want to risk a miscarriage.

A friend ha a 1 in 10 risk of Downs and other conditions. They had also a cleft palate. The OB wanted her to do a Amnio as it would make his job and the paed's job easier if they knew what they were going to be dealing with when the baby was born. My friend said tough and didn't get the CVS.

A friend from mothers group chose to do a CVS and she started leaking fluid (despite it being performed by the best specialist for this procedure in our city). She said she lost her tummy and was on bed rest for a week. The pregnancy is continuing so far and the CVS was clear. I just can't imagine her grief if she'd lost her baby.

I just rang the OB that did the scan and calculated the risk etc and I am not even in the increased risk catagory, now I am even more confused as to why I would even be offered the options. I think I will call the hospital OB clinic on Monday and speak to someone with all our questions. I know they have genetic councillers we can see too if need be.

Thanks again everyone, your support is really appreciated.

Hi hun. When I got pg the first time I was already 38. I can't remember what my result was at the 12 week mark, but it was OK, but I do remember my OB saying that for my age, anything above 200 is good. He did say that there is a very small chance that I could miscarry a healthy pg if I went ahead with the amnio, so he said 'why risk it when you went to all the trouble with IVF alrerady' ? I trusted him and went ahead with the pg, and I had a healthy baby (although I lost my first LO to an unrelated problem). I guess your OB could be swaying on the 'cautious' side as risks rise when you've over 35, but it seems to me like he is overly cautious. I think 1:350 is pretty good hun. Weigh up everything you've been told so far, ask more questions if you need to, and then make an informed decision that feels 'right' for you. GL hun xox

I should have mentioned talking to a genetic counsellor! Yes, do that first.

I recently had my nuchal fold and at 41 was worried too. I was told that they wouldn't recommend an amnio unless I came back with worse numbers than 1:300.

Don't feel bad for not knowing what you would do. I felt the same way and I imagine we're not the only ones who would struggle with the decision.

Good luck with whatever you decide to do.

My sister was given a 1:42 chance & had the amnio. She was so stressed & had to have some hard conversations with her partner.
In the end it was a lot of stress for nothing. Perfect gorgeous child!

Do what you want to do & don't be pressured into something.

Best of luck.

I was offered both the Amino and CSV after both of my NT scans. My first preg at 36 was either 375 or 725 (Im bad I cant remember) and they said although that was technically low risk they would still 'encouraged' me to do them due to my age.....I declined and they were fine. This time I was 39 when we got preg and my result was 1185 again I was offered the amino or CSV....again I declined....I think sometimes they just do it to ensure they have covered themselves....Luckily both of my doctors suggesting the tests were perfectly fine when I said no. They just re-iterated that there is still a chance no matter how slight...and made sure I understood that.

Goodluck with your talk on Monday!