Amniocentesis fears- can anyone reassure me?

[mexico]

Apologies if there are already threads on this, I am not good at searches! My triple test results have shown a higher than normal DS risk for my baby. I am 16 weeks pregnant. I am reaching the conclusion that to be able to relax at all for the rest of my pregnancy I am going to have to have an amnio, but I am frightened of the miscarriage risks. The risks seem high but no-one I know seems to be aware of anyone that has miscarried. How common really is it? What are others experiences of amnios? Any help is so much appreciated

Hi mexico, I fully understand your worries and anxieties, as I had a similar thing when pregnant with dd. I had a nuchal fold scan/blood test which showed a higher than normal risk for DS. We, well I really, decided that I couldn't spend the rest of the pregnancy not knowing and that I would rather know sooner than later if there were any complications. Statistically the chances of DS were smaller than the risk of miscarriage, but that didn't effect how I felt. I had an amnio at 18 weeks, by a doctor who is well regarded locally as being very good at it. (I think that it's him doing the scan in the DK pregnancy book). He was very matter of fact about it and said that he could tell just by looking at the foetus that there was nothing wrong, and the results came back fine. I took the rest of the week off work just to lie down and recover as much as from emotional exhaustion as anything else. I know statistically that there is a 1%chance of micarriage, but like you I don't know of anyone who has miscarried as a result of one.
I don't know whether or not this help mexico, in the end perhaps you have to go with your feelings - reasoned arguement didn't seem to help

mexico, miscarriage rates quoted for amnio are nationally averaged, so some excellent doctors (such as Allatsea's!) have a much lower rate than other, less careful or skilled practitioners.
If you are in London, the best place to go is the Harris Birthright Centre at King's, where they are very good indeed.
Maybe you could find out about your doctor's personal miscarriage post-amnio rate as a starter. As it happens I do know two people who lost their babies after an amnio, but I know an awful lot more people who had the test, had their minds put at rest and went on to a happy outcome.
Hopefully some more people who have had the procedure will see your thread and be able to put your mind at rest over how it works.
Very best of luck and hoping you get lots of support.

mexico - what are the numbers here? a friend's bil who's an obs/gynae person told me that he would tell a woman with a lower than 1/150 risk not to bother with an amnio, given that miscarriage rates are around 1/100. my own was around this mark for my first pregnancy, but I too felt I could not relax so had an amnio, which turned out fine. 2nd pregnancy I had a 1/30 risk of a genetic abnormality known as edwards syndrome (more serious than downs) and had no second thoughts about the amnio. also - a friend of mine did have a miscarriage after an amnio with her first pregnancy. it was dreadful because she was obviously pregnant by then and felt it was her fault that the baby died. but I still went on to have my amnios (I didn't tell her till afterwards) because of my own feelings about a 'bad' result, and those of my husband too.
i agree with marina, try to find out a little more about the stats where you are. my consultant has a fantastic record with her amnios and I felt in v good hands. good luck

Hi Mexico - I started a similar thread on this which I think Dino has linked to back in Jan. I feel for you - its a horrible time. My risk came back 1 in around 130 and my local hossie quoted the risk of m/c at around 1 in 200. I have heard of m/cs after an amnio, but they are rare.

I went thru a period of thinking I would have to know, but then I don't really know what happened, but I just thought, well what would I do if it was bad news? And just for me, not saying this is for anyone else, it probably wouldn't result in me terminating, even though I already have 2 very young children. So, I didn't bother with the amnio. I now only have about 6 weeks to go and I must admit the fears are coming back, but its too late now.

I did ask at my 20+ scan if they would look for DS markers and for any serious problems and they found nothing. This doesn't rule out DS I know, but at least I know, hopefully, that the baby doesn't have any serious problems.

I hope you can reach a decision - its a toughie and no mistake. I think you just have to give it a wee bit of time and work it out for yourself.

All the very best.

Thanks so much to you all for your messages and support. My risk is not so high, 1 in 241, but now the thought is in my head it won't go away.
I don't think we could cope with a DS baby, but I don't know if we could cope with termination either. I suppose by going ahead with the amnio (if I do) I am clinging to the hope that everything will come back as fine and I can relax again. I live in Cambridge and apparently the consultants at the hospital have a fantastic success rate, both trained in London at Kings. They still give you the 1 in 100 risk though.

mexico, it's tough but I really think it's better if you decide before any diagnostic tests whether you would terminate or not. if not, I wouldn't bother with the tests at all.

Mexico, my daugher has Down's syndrome. Do you think it would help to discuss some of your fears with me???? I'm very happy just to listen to you, answer questions, tell you about 'us'.

I'm sorry you're going through such a scary time and if I can help I'd really like to.

I won't say or do anything to try and sway you either way, I'll be honest and frank.

Email me and i'll give you my phone number, then you can call me if you'd like to.

Lots of love - TC xx

Thanks Tomcat, that is really kind. My husband is back from his travels tonight and we have the chance to talk and try and make a decision. I will contact you again tomorrow if I need to chat on phone. I suppose my biggest unknowns about a DS child are things like 'can they attend a nursery/childminder or would I have to give up work for good?', 'would they stay living at home forever (now that could be a worry with all children these days)?' and 'how would it affect my two year old son?'

Hi Mexico

I felt exacly like you, and as I was an older mum, was advised to skip the blood test as they would show as a high risk, and if I wanted to go for an amnio. After huge amount of worrying and researching decided to go for it( pre mumsnet days! or I would have been able to find out more).

When we got there it wasn't my dr, who was the clinical director of the hospital, but someone else and I really wasn't going to do it. Knowing that the skills of the dr are hugely important. However the woman listened very nicely and managed to get him to come and do it. Then I had 2 days bed rest, before the initial results came through.

I relaxed for the rest of the pregnancy knowing this, but it is very much an individual decision.
Good luck

I've had 2 amnios, and both went fine. As someone mentioned, it really depends on the statistics of the individual doctor, rather than the national average. If you understand the process, you might feel more comfortable. The sonogram will show where the foetus is, so the doctor can avoid that area and insert the needle in a liquid pocket. I found that watching the process actually made me relax a bit since I understood exactly what was happening. Both times my doctors advised that I stay in bed for 24 hours after the amnio. One of my doctors had a 1/1000 experience of miscarriage, and he said that that he didn't think the amnio caused the miscarriage in that instance. My other doctor had never seen a miscarriage after performing and amnio. Good luck with your decision.

Bless you Mexico, you poor thing. What can i say .... I'll be honest with you babes........ right now, with lottie at 2 and a half it aint no different to having a kid who hasn't got DS! I'm really serious.

There are things that are a bit upsetting and worrying yes and I'll get to those but really the main thing is that i have a truly spectular daughter who is 100% healthy, and 200% happy and cute and pretty and funny and cheeky and strong willed and naughty and loveable.

She is a bit slower in her speech but still has about 75 - 100 words and is now copying everyhing we say anyway. She's a bit slower with standing but gets round doing commando creeping and bottom shuffling.

Everything she does do makes us want to burst with pride. we take nothing for granted and every small acomplishment is just so wonderful.

She went to a childminder and I was lucky enought to have parents who wanted to looka fter her while I work. I do work 4 days a week so i can take her to speech and language therapy and physiotherapy, all of which i just consider to be our kind of mother & toddler group. the support system is wonderful but I really don't feel I need it, not yet nayway.

She goes to a mainstream nursery and is getting on really well. She'll be going to a mainstream school at least until she is at GCSE stage and then we'll reasses her needs.

Dpon't know about living at home for ever, depends on each individula but most people with FDS do live independently. The way I look at it if Lottie stays with us, great i don't go throught the heartache of watching my baby have to fly the nest and I get to have her around all the time to sahre things with and cuddle up on the sofa with, and if she does live on her own then that'll be wonderfuul for her and I'll be very proud.

As far as i can see, from others i have met who have 2 or more children, one of thoise having DS, it has no affect other than a positive one.

I was worried Lottie would be bulied later on at scholl and all the hundreds of stories that have been sgared with me tell me that the opposite is true. One person told me the story of a boiy with DS being so popular in his class that whoever was monitor of whatever that day he was always picked to be the helper and it got out of hand so they hand to change the rule about monitor picking someone of their choice!

What else are you concerned about.
I'm home tonight. Get my number off mumsnet and i'll be there if you need me.
Or just keep asking questions here. I'll try and log on at home or I'll check in toimorrow.

Sorry about mistakes i know must be here, typing too fast and no time to check.

TC xxxxx

As everybody else has said, first, you should realize that the triple test isn't very accurate, and second, you should pay attention to the miscarriage rates for the person who's doing your amnio. The overall rates that are often quoted include unskilled people and amnios done years ago when the rates were much much higher than they are now.

I found the amnio very reassuring, mostly because the sonogram was inaccurate, due to a wiggly baby, and showed markers for a fatal chromosome disorder. I was kind of shocky afterwards, possibly just from the emotional stress of the whole thing, but also I did have cramps. I rested for 24 hours, and was fine by then.

Mexico, I know you are worried and I am sure it won't help, but your chance of having a DS baby is far lower than they would even bother doing an amnio at our hospital. When I was pg, they wouldn't consider it unless the risk was less than 1/100, or there were other indications of a problem. Once you get to a probability of 1/241 the chances are still so low there is less than half a % chance there is a problem with your baby, that means a 99.6% chance everything is fine. Bear in mind amnio cannot tell you about everything, there are still things that you will not know until your baby is born that could change your life as much as having a downs baby. I am not trying to make things worse, believe me, but what if your child is deaf or blind?? Autistic or a genius?? There are so many things that make your child a unique and special person, so would downs be any different than another issue?? I hope I haven't made things worse and stopped you relaxing, but I think all parents to be worry about the future and spend time thinking 'what ifs'. I know in my case I wasn't worried at all 1st time around, it simply didn't occur to me taht anything would happen. I ended up with a 13 week prem baby and in hospital for weeks. Nothing I could have done, no tests would have prevented/given me warning of this happening. 2nd time around I worried incessently until I saw a specialist at 13 weeks who told me I had a 40 % chance of similar, but taking various vitamins/aspirins could reduce my risk to 10%. To me that meant a 90% chance of everything being fine. I would gamble a lot of money on a horse that had a 90% chance of winning, wouldn't you? (PS everything was fine and DD was born on her due date, DD1 is now 5 and thriving - if small)

Please think long and hard about having the amnio, remember your worries are normal pg thoughts. We all wonder how we'll cope if anything goes wrong. There is only a slight chance something will, why worry!!

Well said Chrunchie.

I think crunchie's post is very good. I'm currently pregnant with babe no 3. I know I have a higher risk of autism than Joe Public becuase I already have one child with autism (at the more severe end of the spectrum). Luckily there is no antenatal test for autism. It's also like Down's - a spectrum condition- which means that some children/adults are hardly affected at all, whilst others have more serious problems. The amnio can't tell you that (unless it came back as mosaic-some cells downs, some normal, in which case it would be a good guess that the condition would be at the mild end)

Remember that whatever risk factor you come back with (and previous nuchals have given me 1 in 2600 and 1 in 3000 odd for my last 2 pregnancies) you could always be that 1 (so what I mean is why not be reassured by 1 in 250 odd - if you would be by 1 in 3000) and there are no guarantees anyway. My little boy has a "perfect" set of chromosomes, but he's still severely disabled.

I do worry about having another disabled child (don't we all) but people do cope- and anything can happen at any time anyway. The one thing you can be certain with a child- no guarantees!

Just to add to T/C's post- my son has been in mainstream all the way though. I suspect he will need supported living of some sort when he is an adult, but generally that is arranged before its needed desperately.

None of this means that I'm saying you shouldn't have an amnio- just that it is worth bearing in mind that you would be risking a miscarriage for a very small risk. And it is worth knowing before you do the amnio what your chosen course of action would be given a positive test result. If you wouldn't terminate anyway then you are risking miscarrying a healthy baby to just give you more info.

BTW- there are other ways that Down's can be suspected. You could for example have further detailed scans which would look for soft markers that tend to be found in Down's babies. That might reassure you, without giving the amnio risk.

Dear Mexico,
I had 1 in 64 odds come back and so decided to go for the amnio........it is a challenging time for all concerned but I am glad that we had that extra test.
Luckily my results came back ok and my DD is now 8 months old.
I also had 2 friends whose odds were 1 in 56 and 1 in 8 - both had amnios and were OK.
Of course it is a major decision to make and I wish you well.
PS - the NHS results do take an age to come back but ask if you can send a sample off to get a private result, we did this and the result was back in 3 days - they do charge for this but with the NHS taking a week to get the result and us frantic with worry it was worth it.

All of your messages are so heartening and most of you seem so much braver and stronger than me, but I am having a bad day. My DH is very keen for an amnio, but not pushing me. He does not want something hanging over us for all those weeks. I think tomorrow I will attempt to find the m/c rate for the consultant who would carry out the amnio, but I have a feeling that they will not alter their 1/100 figure as it is 'policy'. Lots of food for thought though, and of course no right or wrong. I will let you know what I decide.
Mexico

mexico - whilst I personally have no experience of an amnio - I too like TC have a little girl who is almost 2 who has down's syndrome.. to answer your question - since last September she has attended full time nursery and loves every minute of it. In fact we are leaving soon and the nursery are upset about her going..... in fact caring for her is like caring for any other toddler.

How will it affect your other child - can't answer that although I am now pregnant with our second child. In all the families I have come across the relationship between the siblings is just as 'normal' children will have - none tend to feel left out or burdened by having a sibling with Down's syndrome.

However, it is up to you to make the right decision for you.

Would your dh be reassured by further ultrasound scans? It can be a good compromise in situations like yours, where the risk isn't huge, but enough to get you worried. If soft signs are seen then you could have an amnio then.

Oh missed the other child bit. I've written a bit today about sibling relationships - see other subjects- selling houses on bbc2 thread. DS2 adores his autistic brother. I would imagine that in many ways having a sibling with DS is easier than a sibling with non-verbal autism (at least children with DS generally want to interact!) I don't think ds2 misses out particularly. Some things are harder (family days out)- but they may well be autism specific difficulties. There are a lot of sibling support groups out there now- so he's always going to know others in his situation. He's learning some valuable life lessons growing up with a disabled sibling as well. Anyway lots of "normal" siblings grow up hating each other- and so far that doesn't seem to be happening. DS1 is just ds1, and ds2 is very accepting of that as its his normality. Don;t know what the new baby will make of it- but will just slot in I suspect.

Eek, Mexico, it's a tough time you poor thing

I had an amnio 1 month ago, at 17 weeks. I chose not to have the triple screen as it is widely inaccurate, but because of my age (35) I could go straight to amnio. I was counselled by a nurse beforehand AND by the doctor just before the procedure. The room was dark (nice) and I had a screen just for me to see the baby - first time we'd seen it! My tummy was then disinfected and the doctor stuck the needle in. It's unbelievably thin and doesn't hurt at all going through your abdomen but there is a dull,crmapy pain as it punctures the uterus. Bucket loads of fluid was collected. I got up straight away - felt totally fine. Mild, period-style cramping pain for 24 hours so took the hospital's advice and just rested - definitely no lifting. I did feel a bit yuck, but I was having simultaneous round ligamnent pain.

2 days after the amnio the baby started to kick (and I mean KICK!) and I think for the first time I really thought about how I would feel if I had to have a termination. I would still have gone through with it as I cannot face the prospect of a child/teenager/adult with any type of disability.

What struck me most in the past week since the results came back, is although I'm not having a child with Down's or a neural tube defect, thank God, there's a million other genetic defects that cannot be tested for. I think I thought that the amnio would give me ALL the answers and it doesn't. Some days I just walk around in a panic, worried about all the things that can't be tested for. I thought a good amnio result would leave me feeling elated but I just worry more.

Sorry to waffle, I don't know if my experience helps.

Good luck

I think you need to honestly answer this question Would it make a difference to you if baby was DS if the answer if no why risk mc as it is possible the baby won t be. Hop eall goes weel for you

There are never any guarantees though Highlander. Not ever. My friend's sister was knocked down and severely brain damaged age 19, she will need lifetime care. My son's SALT's daughter almost died form meningitis age 18 and as my SALT said "you worry about them, you care for them and just when you're letting them go they almost go and die on you". My "normal" son may be 2 and half now and looking like he's developing fine, but I know he could regress, or anything could happen. The thing is though whatever happens they're still your children so you love them as much (more? a lot of mother-love is protective) as any mother loves any child .

WRT loujay's post- what you can ask for (and I'm guessing this is what the private clinic did- although it can be done on the NHS as well) is a DNA test for Down's. This will test specifically for Down's and the results come back within a few days. The chromosome checks always take weeks but they would pick up other conditions as well- any fairly major rearrangements within the chromosomes would be seen.

Word of warning though- the tests - even from amnio are not aways conclusive. For example my friend was told she was carrying an XY/XO mosaic- meaning some of the cells were missing a Y chromosome. In full blown state this would gve Turner's syndrome, in a more mild state some fertility problems/sterility (I think) and maybe sexual development problems. However the dodgy cells could all have been within the placenta- meaning that the baby was 100% "normal"- and that the baby would have no problems at all. This sort of situation is rare- but it is worth knowing before you go for amnio - that you don't always get a straight yes or no. I don't know how amnios work- if you get offered councelling before it I think it would be worth taking it- although I suspect the NHS is too strapped for staff.

Hello mexico,

I had a tough time with tests - nuchal, cvs and amnio. Just thinking of the stress makes me feel stressed now. What ever the stats if you decide to have the test then be kind to yourself, take extra special care of yourself and if possible have someone with you when you get the results. I had to wait nearly five weeks for the all clear but during this time I was the least worried as I could only wait. There was nothing else to do - it was a sort of break in the process.

Lots of Best wishes