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Hi everyone,

Not sure if I'm posting this query in right place but hope so...

I am just over 13 weeks - as I'm almost 41 and have had a missed m/c before, I'm obviously still worried about m/c - anyone know what the risk is after 13 weeks? I've heard it starts to fall after 12 weeks. Also, when should I start telling people about the pregnancy just to be safe - maybe after 16 weeks and I've had various tests?

Also, I've had a nuchal translucency test which came back normal and am just waiting for some blood test results. Anyone got any advice on also having an amniocentesis and the risks involved?

Any advice really appreciated,

thanks a lot,
Oliv


 

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Hi Oliv,

Check this out and read under early scans - it gives you an idea of miscarriage risks. :) http://www.miscarriageassociation.org.uk/ma2006/information/ultrasound.htm

As far as the NT test (+ bloods) are concerned an amnio is usually offered to those who's results come back a higher risk than 1:250 and the risks of miscarrying through an amnio are said to be about a 2% chance. If you have a good result I would bear in mind that you are far less likely to have a baby with downs than you might loose a healthy baby through an amnio. That's the way I reasoned it to myself. But of course its a very difficult decision to make and there is no right answer.

You could always save telling people about your pregancy until after 16 weeks if you feel happier about that.

Good luck hun ^hugme^

Jen XXX

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Hi Oliv,

My thought process is the same as Jen's on this. I am waiting for my Triple Test results which I am due to get on Fri. I have already told my MW that whatever the result, we wont be having an amnio. The risk is too high for my peace of mind and we we would be having the baby whether or not it had downs.

A very personal choice and a hard one to make I know. You can only do what feels right for you.

Karen x
 

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You can always speak to www.arc-uk.org if you want more information.

HTH's
Deb

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Hi ladies,
I've just been reading through your posts...This is my story - it may help - hope it doesn't hinder!!

I had a great nuchal scan result and went ahead with the triple test.  My sister is older than me (I'm 37 and sis is 40 and 20 weeks pregnant) and she had her results back and they were 1:2500 - so i thought I'd kinda get a similar result...Wrong! Our results came back at 1:41 - a far increased risk on my age-alone result of 1:215...

DH lost it when we got the news, he had said before the tests that he would still want a baby with Downs, but when faced with the reality he felt very different...Luckily he came round and we got to talk seriously about an amnio.  From what we were told, each hospital / Clinic has their own percentage of miscarriages following an amnio...ours was O.5% - so very good odds...our odds on Downs is greater than the risk of miscarriage but any risk of miscarriage was too great for us...
It’s a REALLY hard call to make...but all i know is that i wish i had discussed it it more depth with my DH before we had the bloods taken Number 1 and that i’d never taken the test in the first place!!!  My midwife did ask me why i was bothering to have the test if we weren’t going to abort...but i was naive and thought the result would be good and bring me relief like my sister! Bless me eh?!!!
The first week or so following the news was hard, but we’re back on track and rolling with it.  I’m able to sleep at night without the awful feeling of worry and angst – but i am nervous about the anomaly scan (more than normal) as they will be able to see the baby’s heart and check for any further pointers of Downs. 
We are now known as a “high risk” pregnancy and we are being looked after by an obs’ as well as the midwives.  All good i suppose, but a reminder that our little one may not be in the best of health.
We said no to amnio and we are living with it ok...no major stresses at night and the happiness has crept back...

Good luck to you all – here if you fancy a chat!
Lottie
XXXXXXX
 

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Hi Oliv,

Congratulations on the BPF!

I'm not in the same age group as you, but I'm over 30 and was offered multiple tests (we've just moved to the USA) and we decided that after two miscarriages and a LOT of treatment that whatever the results of those tests would have shown that we would still want the baby. I have had some contact with down's children and understand a little of the pro's and con's of their condition so didn't take the decision lightly.

In the end we just had the scan at 20 weeks as who wouldn't want to see their baby?! Luckily for us everything looked fine. We're still nervous that things can go wrong, but are a little more optimistic.

We've still not told many people that I'm expecting, just in case the worst happens, but I'm letting it slip to a few folk as I don't want people to be totally shocked when we give birth.

All in all, it's a personal decision and there's no right or wrong answer.

Good Luck.

Weezy
 

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i agree with everything here- it's a personal decision and you have to weigh up your own concerns.

Some places do amnios all the time and have very low miscarriage rates, so the amnio risk might be much lower than that of Downs. my background risk based on age was 1:127.

I had good results from my nuchal scan and combined blood test at 11 weeks so didn't have the amnio. but i've been fretting ever since about the possibility of Downs, though of course the longer i am pregnant the more i know we will love our baby regardless. i think i would have the amnio though if i were to do it again, at a private centre with lots of experience.

i was worried too about having another miscarriage, but started telling family after the 12 week scan. i didn't tell work until 24 weeks.

congratulations!!!
 

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Hi Oliv,

I would only go for an amniocentisis if you really want to know 100% if your baby is suffering from a chromosonal disorder. I was faced with a high risk nuchal result last year and opted for an amnio as we just needed to know for sure what, if anything, we were dealing with, we wanted to be prepared. We didn't want to go through the pg with a worrying cloud above our heads.

But, like everyone says, amnio does not come without risks  :-\ The FMU where I had mine done has a mc rate of 0.5% and I don't think you can get much better than that really. I think overral the risks vary between 0.5-2%.

It's not a very nice experience, although not at all painful - just strange. But the wait for results is awful and then the worry for a few weeks afterwards that you may still mc (when you'll already know if you have a healthy bubs on board) is hard.

It's a hard decision to make and really only one you and your dh can make.

Congratulations on your pg and good luck with whatever you decide.

S xxx
 

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LottieG said:
Hi ladies,
I've just been reading through your posts...This is my story - it may help - hope it doesn't hinder!!

I had a great nuchal scan result and went ahead with the triple test. My sister is older than me (I'm 37 and sis is 40 and 20 weeks pregnant) and she had her results back and they were 1:2500 - so i thought I'd kinda get a similar result...Wrong! Our results came back at 1:41 - a far increased risk on my age-alone result of 1:215...

DH lost it when we got the news, he had said before the tests that he would still want a baby with Downs, but when faced with the reality he felt very different...Luckily he came round and we got to talk seriously about an amnio. From what we were told, each hospital / Clinic has their own percentage of miscarriages following an amnio...ours was O.5% - so very good odds...our odds on Downs is greater than the risk of miscarriage but any risk of miscarriage was too great for us...
It's a REALLY hard call to make...but all i know is that i wish i had discussed it it more depth with my DH before we had the bloods taken Number 1 and that i'd never taken the test in the first place!!! My midwife did ask me why i was bothering to have the test if we weren't going to abort...but i was naive and thought the result would be good and bring me relief like my sister! Bless me eh?!!!
The first week or so following the news was hard, but we're back on track and rolling with it. I'm able to sleep at night without the awful feeling of worry and angst - but i am nervous about the anomaly scan (more than normal) as they will be able to see the baby's heart and check for any further pointers of Downs.
We are now known as a "high risk" pregnancy and we are being looked after by an obs' as well as the midwives. All good i suppose, but a reminder that our little one may not be in the best of health.
We said no to amnio and we are living with it ok...no major stresses at night and the happiness has crept back...

Good luck to you all - here if you fancy a chat!
Lottie
XXXXXXX
Lottie - this is exactly my experience from yesterday. Risk of 1:64 and we were waivering on the amnio, but stuck to our guns.

Gut wrenching to be in the position, but exactly like you, with the benefit of hindsight, I would never have had the TT.

Karen x
 

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Hi there

If it's any help, we do have a Downs baby and it's not the end of the world.

We chose not to do any testing.  I got PG after DE with my sister's eggs, on what was going to be our last go of IVF before giving up, so there was no way I was going to do anything to put the PG at risk of miscarriage, however slight the risk, and no way I would have terminated the PG unless it was life-threateningly serious.  We felt that although the screening was non-invasive, there was no point in doing it as it didn't tell you for definite whether the baby had Downs or not.  To be honest, as my sister was only 36 when she gave me her egg, I never thought that Downs would be an issue.  We went for our 20 week scan and the sonographer offered to tell us about 'soft markers' but again we said no as that wouldn't tell us for definite.  Therefore the first we knew about Lizzie having Downs Syndrome was when she was born.  After that, they checked out her heart and found the hole (which was closed surgically a month ago).

It was a shock finding out at birth, but on the whole I'm glad we didn't know before, because I would have worried more during the PG, and I think it was easier to deal with the bad news when we had a real live baby rather than just a diagnosis.  However, the advantage of knowing beforehand is it may affect how your PG and birth are dealt with.  In my case I was a high risk PG anyway, because of my age and gestational diabetes, and I was always going to have a c/section because of a previous myomectomy, but if I had been a low risk PG, I may have been upgraded if they knew the baby was Downs. 

I have learned a lot about heart defects in the last 6 months.  Not all of them need surgery, and of those that do, some are corrected by one operation and that is it repaired for life.  Open heart surgey is major stuff, but for the specialist hospitals it is what they do every day, so a heart defect is not necessarily a life sentence.  (though it is only fair to say that some heart problems are serious - when Lizzie was in having her heart op, there were other babies in there who had been operated on day 1 of life to keep them alive).

I hope for your sakes that your babies turn out as you want them to, but if I can be of help, please feel free to post or IM me.

Good luck!
Essex Girl x
 

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Dear Essex Girl,

Thank you for much for your reply...it is a great help.
Yes we are worried and yes we wish we weren't told of the high risk...
it's weird now becuase it's other people who are more concerened than i am? Maybe i am used the idea a little more now.

Downs only scares me because i want my baby to be well and happy, it does concern me about the heart problems that are common with Downs, but as you say - you have to roll with it and fight when needed i suppose.

You sound like a truly wonderful Mum and it is humbling to hear your story.  I only hope that if we are blessed with a child with Downs that I can cope and be there for her/ him as best i can.

After all - you're always going to be worrying about your child aren't you? Every parent does - it's a life commitment!
Sending you, Lizzie and your loved ones lots of love.
XXX

 

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Hello,

I just wanted to let you know a negative experience with the amniocentesis. 0.5-2% is 1 in 200 or 2 in a 100, which means it does cause miscarriage in some. My Mum was one of the unlucky ones when she was 40 and she was 5 months pregnant. To this day (now at 60) she grieves her lost and the decision to take the test (and to this day she blames my Dad who she is now divorced from for saying she had to do the test).

Personally I wouldn't contemplate it having experienced my parent's feelings of guilt & blame and the tough time my family went through after the loss of a baby due to this test. I also don't think the NHS highlight the realities of the risks enough (my sister was told it was 'very rare and not to be silly' when it was being discussed with her which as you can imagine she had quite a strong reaction to).

Just thought it was worth sharing, as one would have to be able to deal with the emotions you'd experience if you were unlucky enough to be one of those 2 out of 100

Diane





 

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Wow - Diane,

Bless you for your thoughts and feelings on this - obviously a tough subject...
I'm so sorry for your Mum's loss - i can't imagine how difficult it must have been and still must be for her...If only the NHS were able to give more time to exlaining the pros and cons of an amnio - i too was jsut told that it was very unlikely that i'd misscarry - not once was there a conversation on what would happen if i did...
Thank you for sharing your story with us and for certainly making me realise that we made the right decision.

Wishing you and your Mum lots of love XXX
^hugme^
 
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