In a quandry about having an amnio

[Lordashley]

I had a combined (bloods plus scan) nuchal fold test at 13+5 and the result came out as high risk for downs - 1:199. I'm 35. I've been offered an amnio at the local hospital, where the miscarriage rate has been quoted to me at 1:150. Being in Scotland, it seems it is impossible to get details about the miscarriage rates for individual consultants.

I decided to have the amnio and went yesterday, but they couldn't do it as I have an anterior placenta. The consultant seemed very nice and said she would certainly be able to do it in a week's time, when I'll be 17 weeks. The hospital have refused to give me a detailed 18-20 week scan (which is not routinely offered here) UNLESS I have the amnio - this seems pretty crazy to me. But really I'm still in a quandry about whether to have the amnio at all as with a 16mth old DD already and a full time job, I'm really not sure I could cope with a child who has Downs syndrome.

Can anyone who has faced similar odds and choices tell me their experience? I guess I'm worried I'll choose the amnio and miscarry a healthy baby.

As an older mother, I had amnios for both my pgs. My gyn/ob told me I had a less than 1% chance of miscarrying.

It would have broken my heart to terminate a pg but to have a Downs syndrome child with one parent in their 40s & another in their 50s doesn't seem fair on anyone, imo.

there are some wonderful threads on here about having a child with downs syndrome, to a search for posts by Thomacat / TeeCee and Eidsvold.

your odds of having a miscarriage due to the amnio would appear to be higher than the odds of having a child with down;s syndrome.

i think you need to find out a lot more, before you make your decision..

I've read many of the threads with posts by Thomcat and Eidsvold. I've also read through the material on the Downs syndrome society website and (and I know this is a personal decision) my husband and I have pretty much come to the conclusion that having a baby with downs is not for us.

I know that means that the most sensible thing is to go for the amnio - but for some reason I'm still finding it hard to make the decision. So I suppose I'm looking for some info. on people's experiences of amnio.

PS I really don't want to offend anyone who has a child with downs - I admire them greatly but don't think I can take that route myself.

Please believe me that I would never terminate a pg because my unborn baby had Downs! It would only be because I would be so concerned as to who would care for him/her once dh & I are too old, too sick or dead.
One of my dd's best friends has Downs & she's a wonderful little girl - a joy to have around. Her mum has 4 kids aged 17 to 10 months & she & her dh own & run a restaurant.

may i make this point? i came back so low risk for downs syndrome etc.. so that was never an issue, both my children were born healthy and fine..

but now DS is showing signs of being quite badly dyslexic, and is struggling, so we are in a whole new world of SENCOS, appointments with specialists etc. that was very unnerving to start with. DD is struggling verbally, and has been referred for SALT...

my point is, you just don;t know what life is going to throw at you...

the fact that you have more chance of miscarrying a healthy baby than you do of having a baby with down;s syndrome would be the main thing i would be discussing with my health care providers...

Lulumama - that is a very good point, and not one that I think I'd thought through fully.

to answer the OP's actual question...(I don't think she needs second guessing here)...

I had amnio and it was fine in the sense that the procedure was fine (though I had a bad result). I had anterior placenta second time which made me a more suitable candidate for CVS - this was also fine and this time the results were fine too. Not sure if you are too late for CVS though.

All the reports I've read suggest that m/c rates are lower than the 1% but I was of the view that I would cope with a m/c better than some of the genetic disorders an amnio tests for.

Have to dash but will try to write more later.

i hope you and your DH get all the informtaion you need to be able to make the decision that is right for you x

I was part of a recent thread about amnio that went a bit pear-shaped, so I'm hesitant to link.... but putting aside some hurt feelings, there were good points on it, if you search for my name you'll find the thread. I did have amnio when my risk stat was far better than yours.

If you feel that the result of a child with Downs is much worse than the possibility of losing a healthy fetus, then I could understand proceeding with amnio in your case otoh, many people argue that Downs is a mild disability at worst, that nothing in life is guaranteed, and it's unacceptable to endanger a potentially perfectly healthy fetus without strong justification or maybe, they personally just could not do it. Personally I don't think anybody can tell you what your priorities should be. You just have to soul-search about it.

Good luck.

This is such a difficult subject! TBH, I don't know anymore what I'd decide to do or would have decided had that situation arisen.

Now that I have children, terminating a pregnancy seems a terrible option but this is my personal feeling. Were it necessary, of course I would terminate and I feel very strongly that women should have the right to choose.

By condoning the termination of a genetically "faulty" pregnancy, I would risk the wrath of MN & I can't face that atm.

Conclusion: it's very much a personal decision & there is no right or wrong answer.

I don't think the OP should have to worry about the wrath of MN and nor should we (though I know it's scary). I've been through it and I'm willing to share my experiences of the amnio and CVS itself.

Not really willing to enter into discussion about the rights and wrongs - we all have our views and they are all valid.

Anyway, not sure what else I can tell you Lord Ashley. I am an advocate of both tests and I have been through far worse physically and emotionally in my life but that's just my experience. Hope you are managing to work towards a decision that feels right for you.

Lordashley if you know you really don't want to carry a baby with downs to term then you should have the amnio, you have to do what feels right for your family. I would like to say that you need to think about how you would cope with aborting a baby at such a late stage in pregnancy, you'll have to go through labour and delivery a small but perfectly formed baby.

Could you pay for a private scan to check for soft markers?

lordashley,
we had a result last week of 1:50 risk of DS. I am currently 14 weeks today. I too had the combined test.

We were able to see the consultant this week. He quoted a mc rate of 1:300 for an amnio. CVS has to be done by 14 weeks at a specialist hospital. The other option we have is to wait and see what the 22 week scan shows.

At the moment we seem to be heading for choosing not to have any tests apart from the scan. For me even a very small risk of miscarrying is too high. I have suffered one before and it was devastating for me. But agree that it is a personal but very difficult decision for you and your dh. We have certainly had a stressful week trying to decide what to do.

I guess if you think you will terminate then extra testing makes sense though.

lordashley,

just wanted to share my experience. i'm 17 wks preg and after blood test was given a 1:60 chance of having baby with downs - thats a 1.67% chance which is really low. after scan checking on the soft markers thats gone down to 1:90 which is just over 1%. we are having our 20 wk scan in 2 wks and as consultant said - baby will be bigger and they can see more.
we are keeping this baby as we had a missed mc last year at 19wks and personally couldnt go through a termination at this stage. we also have the choice to have an amnio done at any stage in this preg - i'm thinking about getting one done at 34wks - so if baby is healthy but needs to be delivered early because of the amnio then he will have a fighting chance at that point - thats my choice as i'm the type of person who would need to find out as much info beforehand if baby does have downs.

as i've said on another site look at the results in another way -
your 1:199 is a 0.5% chance of the baby having downs -
thats around the same chance of failure of the pill - as women we dont go round worrying about that all the time do we?

i dont know if this is of any help but as i've said you need to do whats right for you as you are the onluy opne who knows your own situation

good luck in whatever you decide x

Hi,

I'm really sorry you are going through this. I had the same scare with this pregnancy (my risk was 1:62). I'm 24 weeks now. I had a CVS done and it failed (through no fault of the doctor's, I couldn't fault them. It was 'mosaicism' where there was too much of my cells to get a conclusive result on the baby's cells). This was done at Harris Birthright Centre at King's College on the NHS and they are the leading fetal centre. They were extremely professional and wanted to get me in straightaway to do another one before I passed the cut off for the CVS.

For us to risk the pregnancy once was bad enough (we had difficulty conceiving), but to risk it again? DH and I had another heart-to-heart and decided we needed to know asap to make the right decision (I wanted a termination if there was something seriously wrong with the LO and DH did not but we felt talking about hypotheticals didn't help!).

We had the choice of whether we wanted to do the CVS privately as we had been to the Fetal Medicine Centre in Harley Street and they were fantastic as well. Professor Nicolaides (who also heads Harris Birthright Centre) runs the place. Even though it's private, it's a charity as well. I believe he does CVS/amnio tests there on Wednesday... It's quite pricey but I think for a piece of mind, it is worth going to the best doctor you can find. In the end, we put our faith in Harris and our second CVS went like a dream. And we found out we are having a healthy baby boy.

I know you are in Scotland so not sure if you will consider a trip to London to do this? We would have paid all the money in the world to ensure that the risk of m/s is as low as possible. I just wanted to wish you good luck okay? Take care.

Isn't 1:199 about average for your age? I conceived a few days before my 35th birthday and was given based-on-age-alone (i.e. before nuchal scan) odds of 1:235.

So it looks to me is that all the nuchal and blood results have told you is that your risk is still average for your age.

If you are leaning towards an amnio, is going private to have it done somewhere with a named consultant with a known (and lower than 1:150) miscarriage rate an option for you, financially?

Lordashley, I'm forty and 24 weeks pregnant with my third. I had a nuchal scan at 12 weeks which produced a 1:186 chance of Down's. My age risk is 1:75. My other two children were born when I was 36 and 38 and my nuchal results were much better.

It was all very borderline re-having the amnio but I've decided not and had a 18 week anomaly scan instead. This didn't show up any soft markers however I know amnio or CVS is the only way to certainty but I haven't opted for it.

If the 18 weeks scan had shown soft markers I would have gone for the amnio and probably considered a termination. However instead I am just going to go with the odds and see how we do. It is a very difficult and personal decision. I think my husband would have liked certainty but he knew that if he pushed for the invasive test and we lost a healthy child it would have been very hard too. He's decided he's happy to take the chance now. As another poster has said it is a risky business having children. You don't know what is down the track and there are many things that can't be identified in the womb.

Good luck with your decision making. This is just my way of looking at it.

Lordashley - you can ask for a referral to another hospital in Scotland for a detailed scan. It may well be that you will be charged but in my own unit, where there is a concern women are not charged to be referred to Glasgow. Ask for more information about referral - you cannot be denied a detailed scan unless you agree to amnio - that is unethical. Scan is not diagnostic but it may give more reassurance or identily that amnio is warranted.

Where in Scotland are you?

I had one because it's routine in China for mothers 35 and over. I'm really pleased I did - absolutely no offence to people with DS children, but there was no question in my or my husband's mind that we would have terminated if the result had been positive. I did agonise about the miscarriage risk, but decided that certainty was more important (yes, I know there are other things that can go wrong, but I wanted to be sure about that one).

I actually had it done when I was on holiday in Sydney because we also wanted to find out the sex (illegal in China). My consultant, who is one of the best in Australia, said that it was his hunch that pregnancies that didn't survive an amnio were often borderline anyway. He thought the Chinese policy was brilliant and that amnios should be offered much more routinely elsewhere.

It was less hassle than a getting a flu shot, and being able to cross one thing off the long, long list of things to worry about when you're pregnant was well worth the peace of mind.

I would do it again, no question.

ninedragons - I think that obstetrician's hunch was way off the mark. A preggancy is ceratinly put at risk when a needle is inserted as it is invasive in itself. Very sad when an amnio results in the loss of a 'normal' baby which i have seen more than once.

I myself had 2 amnios for other reasons so do know they are necessary, however, I think it is highly reasonable to have detailed scanning to see if there are other markers which warrant such an inavsive test.

There is absolutely no need for mothers of 35 years and over to have amnios as routine and it is frankly barbaric IMO

Thanks for everyone's comments - they have been really helpful.

Mears - I'm in Edinburgh, where frankly the maternity services policy seems slightly barmy. No one gets a 20 week scan, but people who've had a previous high risk pregnancy get 6 scans, regardless of whether their current pregnancy is on track.

I'm thinking of paying to have a detailed scan done at a private clinic, though my partner is still keener on the amnio. The appt. for the procedure is not till Thursday, so a few more days to think on it...

Speak to your consultant again and tell her you really would prefer to have a detailed scan befor emaking a decision about amnio - I would be surprised if she would not agree. I personally would also go for a private scan if you cannot get one done on NHS.

So ridiculous when the practce in my area is to do a detailed scan in order to make a decision