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.

Hi,
My last baby had a heart problem, so I was offered (and accepted) an amnio then (as many babies with chromosomal problems tend to have heart problems too), but I already knew the baby would not survive pregnancy, so did not have the dilemma. (result was no syndromes of any kind).
During this pregnancy, my baby has a heart problem too, although the consultants are hoping for a better outcome. I decided to have an amnio, even though I was desperately worried about miscarrying. I wanted to know what outlook my child has, health-wise, when it is born. and when can I start enjoying this pregnancy/stop worrying...
Even when you turn up for your appointment, you can still refuse the amnio at the last minute. Perhaps you can ask the consultant how many miscarriages he personally knows of that have followed the procedure? How often has he performed this procedure? Perhaps ask for a detailed scan first, and THEN you'll decide, as the equipment will be there all ready for use anyway . I had my amnio this time at 18+4 and they did the anomaly scan at the same time.
Anyway, don't want to tell you what to do as there is no right or wrong answer, just wish you luck.x.

fortunecookie and I have similar situations and so I too chose to have amnio with both pregnancies. I haven't had a chance to read all of the thread so apologize if I am repeating anything. If you do have it, request a FISH analysis and you get the results much more quickly. I have read recently that the miscarriage rate from the procedure may actually be even lower than previously thought as amnios are only done on high-risk pregnancies to begin with. Honestly, I was terrified that I might have to make the decision of whether or not to terminate the pregnancy but I also knew that I would worry myself sick over not knowing one way or the other. So, imo, I think having all of the information you can is a good thing.

nine dragons - actually your consultant is way off the mark - of the research that has been done that I read - whilst a very small % of miscarriages occur after amnios - 3/4 of those miscarriages are in fact babies with no genetic conditions.

I am considering the Amnio too as I will be 39 when LO arrives, and my DH is particularly nervous and this will be dc3 for us. My odds were not in the high risk group after the combined test but I got a fright when a MNer came on to say that she had a 1:5000+ result and turned out to be the 1 in 5000+.

My OB says that it is just a personal matter of how much certainty we need to have to feel comfortable and even though he felt it was unjustified his wife had an Amnio with their 3rd even though she was only 32. I am not as nervous after my 12 week scan as they looked at the heart and the blood flow and the nasal bone as well as the nuchal and my personal feeling is that it is OK, but I will have to see how my DH's feelings on this mater come along in the next 3 - 4 weeks. Tough one ...

That means 25% of the ones that miscarry DO have a genetic condition. I'd say that qualifies as "often". Without having looked into what proportion of amnio tests show an abnormality, I'd be surprised if it were as high as 1/4 (just going from people I know personally who've had an amnio, so not at all scientific), so perhaps it is, as he thinks, a disproportionate number of genetically abnormal pregnancies that don't survive amnio.

Lordashley, you asked for personal experiences so here's mine FWIW.
At 13+3 had the nuchal translucency test which came back at 1:21 risk. I am 38 (just!) so my background risk was 1:150. I separately had the maternal serum test which returned a 1:660 risk - it was too late to combine the 2 test results unfortunately but both results are risk adjusted (I think how it works roughly is that after age 35 your risk shoots up so that a measurement of 3mm for a 30 yo gets multiplied by say 3x for a 38 yo - so it might have been 1:63 if I'd been only 30 if that makes any sense).
After much soul searching I decided that I would not terminate for Down's Syndrome alone and decided to wait for the 20 week anomaly scan. If that had not been available publicly I would have sought a private one.
This one showed a very weak soft marker relating to kidney dilatation. A lot of pressure was put on me at this point to have the amnio on the spot as it was my "last chance" to have her terminated (illegal after 20 weeks).
I trusted my gut instinct that she was OK. Plus they had not picked up any of the really classic D/S soft markers like heart defects. The kidney dilatation is found in about 3-5% of all babies at 20 weeks but 25% of D/S babies. Plus it is not considered a major issue for most babies - i.e. can be fixed, in most cases simply through a course of antibiotics after birth.
I refused the amnio, but I can tell you the hospital consultant was most disapproving. I too tried to get better info on risks of miscarriage but could only establish that that particular hospital was considered to have an average risk.
I considered that this baby was my last chance for another child and I was not going to put her at risk based on what I considered to be quite flimsy "evidence".
At 30 weeks I had another scan of the kidneys (privately) and this showed them to now be normal - but that I was carrying very high levels of amniotic fluid.
As there are risks associated with this condition (called polyhydramnios) I was referred back to the hospital - and back to the same consultant.
She had another look (I was 32 weeks) and said she had "bad news" for me. That she could see evidence of a heart defect and a bowel defect - the latter being the likely cause of the polyhydramnios. She was so sure about this and also very clear that these were classic D/S soft markers that she basically bullied me into having the amnio on the spot. I must admit by that time I felt I needed to know the reality - plus I also knew that if the amnio triggered pre-term labour she would likely survive as a viable baby.
The FISH test result came back 2 days later and I have to tell you I was astonished to be told that it was negative for D/S. I subsequently had another scan privately only to be told that there was no apparent sign of a heart or bowel defect!!
In hindsight it seems the hospital consultant was ready to junp to the conclusion that 1:21 meant a 95% chance my baby has D/S rather than a 95% chance that she doesn't. It really felt like she made the diagnosis at 20 weeks and thereafter was determined to prove that diagnosis correct.
I feel very angry at the approach she took but now having had the amnio and knowing the outcome I must admit I do feel a huge amount of relief - its like I can finally get on and enjoy being pregnant.
I also feel certain degree of smugness that my gut instincts were correct - I always felt that this PG was very similar to my last PG which was perfectly normal, and she has been growing well throughout.
I am 35 weeks PG now BTW and have a new consultant! He thinks there's a fair chance the polyhydramnios is just an anomoly and that my baby is probably quite big anyway.

Hi Lordashley,
I am 35 also and had an amnio two weeks ago, I really was dreading it but the result was good (I got them within two days) and I didn't have any after effects. I was told that there is a risk of miscarriage or if infection for up to 6 weeks after, but if anything were to go wrong, it would likely be within a week.

I am glad now that I had it done but I think if I have another child, I won't have any tests. Once I knew that the nuchal scan was bad, I had to know for sure. I initially agreed with my dh that we would terminate but then changed my mind. My dh, however, said that if he knew there was a problem in advance, he would want me to have a termination, but that if we didn't know until the baby was born, then that's very different. For him, it isn't a baby until it is born!

Good luck making your decision, I know it is very difficult.