'Positive' triple test. Should I have an amnio?

[Dannie]

My triple test result has come back as 1 in 65 (compared to 1 in 170 for an average pregnant 38yo). DH is adamant that I should have an amnio, I'm not keen to have a needle stuck in my stomach and feel that 1 in 65 is pretty good odds. Whatever happened to just assuming that everything will be fine? Should I just do it because it'll reassure dh (and me, I guess)?
I hate the overmedicalisation of pregnancy (and the way people keep telling me how old I am) and I'm fascinated by the disparity between the information from our wonderful midwife and from the not very impressive registrar at the hospital, but I'll be sent to St Thomas's for the amnio, so I should see someone competent (and if all goes well I'm having a home birth)
But is all this necessary, or are they just doing it because they can?

I dont have complete faith in these tests. I specifically requested not to have the test, as i was leaving england to go australia for two months , ( i wanted to have the test done there) However they did the test anyway and the results said 1 in 100, they recommended an aminio. I had the test repeated in australia , and the results were 1 in 700 , the reason for the discrepancy was that the hospital over here had my dates wrong.
I didnt have an amino ,have happy healhty baby boy.

IMO it really depends on what your response would be to a positive result - and that is something only you and your dh can decide between you. After all, the amnio is only a diagnostic test, not a way of prevention or cure. If you were to take the decision of carrying on with the pregnancy if an amnio identified your baby had downs then you need to ask yourself if the slight risk of miscarriage that the test holds is worth it for the positive knowledge one way or the other in order to be "prepared in advance". If your feelings are not so black and white and you would consider other options such as a late termination or adoption then I guess it probably could be worth the risk as the risk is fairly small and less than your 1 in 65 risk factor.
I really understand your dilemma as we are presently waiting for our triple test results and are not 100% decided on our course of action if the tests put us in a "high risk" catagory either. With my first pregnancy I was more clear cut and felt that I would not like to take the risk of an amnio (however minor) as we would keep the baby regardless. This time I am not so sure. How would I feel if I lost the baby after an amnio? Could I live with myself then? How would I manage with a lively two year old and a baby with Downs, how would it affect the whole family? It could be a positive experience for all of us or it could be more complicated than that. I don?t think I would find it easy to make a decision quickly.
Personally, I would do plenty of careful thinking over the next few days about your response to a positive amnio result, read up on Downs and facts about amnio testing so that you feel really well informed and discuss it at length with your DH. It is a difficult topic to consider honestly and rationally and personally I feel that sticking to facts and your own two opinions is the way to go - too many other people out there/here will potentially cloud and complicate your decision with their own strong views - just look at the recent threads about the guardian interview and how people reacted to that - don?t feel bullied or pressured into "correct" thinking - do what you feel is right for you both. Good Luck with the decision.
Oh - and a friend from our local toddler group had one done a few weeks ago and said it was practically painless (she is a wimp!)

Dannie - excellent advice from StripyMouse.
Have you had a good chat with your midwife? This is your decision alone, and one only you as a couple can make, but she may help to clarify some points for you.
The triple test is by no means a conclusive, wonderfully accurate test - about 65% accuracy rate - ie: detects false 'positives' with some frequency. This may be of cold comfort to you tho', with a risk of 1:65. Why did you have the blood test to begin with? I don't mean that flippantly, just interested to know how you felt prior to receiving the raised result.
As StripyMouse says, it really comes down to what you would do should you be carrying a baby with Downs Syndrome. If your thoughts are definitely along the lines of a termination of pregancy, you may wish to consider the amnio for diagnostic purposes. If however, a termination would not be an option for you, there may be little point performing an amnio. OK, so you would be 'prepared', but in order to acheive this state of preparedness, will have run the risk (albeit slight) of miscarriage. Do you want to chance a miscarriage just 'to know'? The answer of course may be 'Yes', but only you can decide that.
You ask if all this is necessary - it is if that is what you want, but not if it is not. Simplistic, but true. The hospital will not be offering any procedure because they can - but because you want it. HTH

Agree with what has been said. You might want to think about a detailed scan though to see if there are any other markers indicating a problem before proceeding to amnio.

StripyMouse has summed up a lot of the "dilemma" issues here, Dannie. The amnio will do what none of the other tests (nuchal, triple) can do - give you a yes/no answer to whether your baby has Downs or any other chromosomal disorder. The triple has still only given you a probability result. Amnio carries a small risk of miscarriage and from what has been said on other related threads there seems to be a definite tendency for doctors to press anyone deemed at higher risk to have this test. So yes, there maybe is a "let's do it because we can" element. Although we have not been pressured into any invasive testing, I have to say (nuchal result improved our odds rather than shortened them, however).
You will be in good hands at St Thomas', as you say. And I had a wry smile at your "advanced years"...I'm nearly 40 and most of the healthcare professionals I have encountered have been telling me off for fretting about it. 38 is pretty juvenile really
Good luck with whatever you decide and with your home birth plans.

We had a positive quadruple test (like triple) which gave me a 1:40 chance of Downs. After an ultrasound at 16 weeks showed no markers for downs (the person doing the scan said my odds had probably improved to 1:70) we decided not to have an amnio as we didn't want to risk the pregnancy and we were pretty sure we wouldn't have terminated the pregnancy if it were down's syndrome. DD didn't have Downs - I was upset at the positive result but once we decided to just carry on I didn't really worry about it - like you I felt the odds were well in our favour. We have a DS nephew so knew a bit about the syndrome anyway and know its certainly not the end of the world if your child has the condition.

Lots of good advice here Dannie. I had a 1:80 result with my first baby, and after lots of heart searching decided to not have the amnio, despite hospital pressure. This was a much longed for first baby (I have PCOS and had tried for 5 years before getting pregnant), and the risk of miscarriage, however slight, just put me off, and the fact that, for me, it didn't matter a bit what the result would be, nothing was parting me from that baby. I asked for a very detailed scan, where we looked for the 'soft markers', and that turned out OK, and my DS was fine and healthy when he was born. My sister, who is a midwife, said that I had certain factors that would have put up my score anyway, like terrible morning sickness at the time of the blood test, I'd had early bleeding in my pregnancy and I had PCOS too.

It all depends on how you feel about it, as has been said so eloquently below. With my second pregnancy I refused the triple test because I just couldn't go through all that heartache again to find out something that I wouldn't have done anything about anyway. Think hard about what is right for you, and make a decision based on that and you can't go far wrong.

Let us know how it goes!!

Problem is dh really wants an amnio and is adamant he wouldn't want a child with Downs and I'm not. We have a 21-year-old friend with Downs who's a talented artist. And we could go through all this and still have a baby with a different disability. And frankly if I applied dh's logic to him, his various health and social problems would make him an excellent candidate for euthanasia

Marina, the age thing is just cos I live in an area where teenage pregnancy is the norm. When I complained of pain in my hip after having ds, my health visitor said it was probably arthritis (honest!) I think I'm a perfectly normal age, then I look at the grannies-to-be accompanying their daughters to scan appointments and realise how old I must look to the staff.

Sounds v hard, Dannie. Bit difficult if you and dh are thinking different things. For what it's worth I personally think the opinion of the one carrying the child in her belly is always more persuasive, though I realise this is of no practical help to you. Good luck, whatever you decide.

dannie, I had an amnio each of the two times I have been pregnant. Both at St Thomas's. The nruses and consultant were sensitive and professional. They did not rush me through at all and answered all my questions. Counselling was offered.

I had amnios as a matter of course because of my age. Even so, the staff did everything they could to respond to my worries. If you're unsure about what to do, I'd really recommend you contact the hospital and ask to speak to someone. Perhaps even visit. If you can also get your husband to do this, it might be easier for you both to agree on your next move.

But I agree with scummymummy. In the end the decision is yours alone.

Dear Dannie,

Just to give you some info, St Thomas' do amnios everyday and have a very low miscarriage rate but you will be quoted 1/100. It is worth going to the hospital as there are Fetal Medicine Midwifes/consultants who counsel you before making the amnio decision. Depending on your gestation a scan will be done prior to amnio to check for what we call 'Soft Markers' which would increase you Down's risk. I know this may seem obvious but I assume you had a dating scan before the Triple test was done as this will affect the 1/65 result. I agree with everyone else you and your husband need to make some decisions before you go anywhere as there is always a potential risk of Downs/Miscarriage depending on what you do. It is a decision only YOU can really make.

Good Luck!!!!!!!!!!!!!!

Dannie, just off the top of my head on reading your post: am I right in thinking you haven't yet had any scans at all ? If so, this would be your next step before considering an amnio. Also remember that although 1:65 sounds high risk, it does mean that 64 babies will be ok. My advice is to try not panic at this stage but to take everything step by step. See if you can get a scan asap. Love Cam

Firstbump and Tigermoth that's really reassuring, thanks. I'm probably focusing on being annoyed with dh, always a good fallback rather than thinking about the actual issue. (I have had a dating scan.) My midwife had a false positive from a triple test so she's healthily sceptical of the whole process.

Dear Dannie - no practical advice really, just thinking of you. I wil ask though, have you had a nuchal scan at all?

No I missed the nuchal scan cos my GP's receptionist told me I couldn't see the midwife for six weeks, and because I was busy and slightly pretending the pregnancy wasn't happening, i opted not to pick a fight. Which was of course, with 20/20 hindsight, the wrong call.

Hindsight's a wonderful thing eh Dannie? I had a very high result for my age . When i was 32 yrs my risk went to 1:55 but ds certainly didn't have Downs Syndrome. I really feel for you with dh, and I know my dh would have been the same as yours, if i'm really honest. Don't really have anything constuctive to say though - sorry. Take care and go with your gut instinct.

Dannie, there have been lots of threads on here about having children with Downs Syndrome, and what it is like having a termination at any stage in the pregnancy. So why not print out some of these threads and read them over with your dh before making any decision. They are full of different viewpoints and would surely prepare you for any outcome!
The latest ones have been 'In the News/Guardian Article'; 'Special Needs/Guardian Article' and 'Getting Pregnancy after a termination of a baby with Downs' - I think that was in Conception.

Whatever you decide, it must come from you as at the end of the day, it is you who has to go through any termination or full-term pregnancy, you who has to endure the amnio. Don't let anyone make your mind up for you, go with that is in your heart and stick with it. I get lots of emails via my website from women who have been forced into making a decision and then regretted it for the rest of their lives. Good luck.

Only my own experience to add Dannie - I was advised to have amnio after getting a high risk double test but turned it down on the grounds of a reassuring nuchal scan, and on the basis that I wouldn't terminate the pregnancy if I knew the baby had Downs. Also I was quoted a miscarriage rate with amnio of 1/100, and couldn't bear the thought of the possibility of miscarrying a healthy baby.

DS was Downs -free but I think if I was ever to get prganant again (unlikely!) I would probably go for an amnio if there was any doubt. Now I know how hard it is just to raise a "normal" child, I know I couldn't cope with a special needs kid.

Don't know if this helps - as everyone else has said it's up to you. This is just one of the first of a series of terrible decisions mums have to make (the next one is to jab or not...).

Thing is, i don't think there's much risk of the baby having Downs, but because dh was at home when the midwife came, he's got all excited. So now I have to go through all this technology, risk of miscarriage etc, to reassure him. But I have now moved the appointment so it no longer prevents me attending ds's sports day, which is some consolation! (I know if I'm taking this ghastly process to its logical conclusion I need to move fairly quickly, but the risk is so small it's just not worth neglecting my speedy 5yo for). The chance of the foetus suffering serious damage if I don't get the fridge fixed is probably a good deal greater than 1 in 65.

Well I had a splendid appointment with the consultant, who turns out to be the same man who did my colposcopy back in February (it's hard not to take this personally )
He conducted the entire conversation on the assumption that the baby has Downs. At no point was the fact that there's a risk of less than 2% ever mentioned. He also gave me wrong information about how long the result of an amnio would take (I phoned St Thomas's on my mobile from the car park to check).
I know it's easier for my midwife to talk sense to me because she doesn't have to rifle through my notes to find out what she's supposed to be seeing me for and she's known me on and off for six years. I forgot to bring the copy of the Financial Times I normally take to hospital appointments as a way of signalling 'You don't have to talk to me as though I'm my own children'. But having been told a lot of crap by the registrar on my previous visit, I was a bit unimpressed.
Definitely a home birth!

So did you have the amnio then? How is DH feeling?

How are you?

Pie, thanks for asking. The amnio is booked for Thursday. Dh is being remarkably unsympathetic, but he thinks I've created my own trauma. (He also thinks that had he attended, he could have won the fathers' race at ds's sports day against a field of men 10 years younger than him who take regular exercise, so I needn't believe anything HE says!)
How are you doing?

Dannie - so sorry to hear how pathetic your consultant has been with you. Hope Thursday goes as well as it can for you and that now you have made the decision to go ahead with it you can get it over with and get on with the rest of your pregnancy. As for the homebirth idea, I am totally with you on that one - anything to keep me away from the hospital!

Dear Dannie,

So sorry to hear you were not treated with the intelligence and respect you deserve. I think that 'risks' are so hard to explain and interpret anyway and it is always hard not to have an opinion based on ones own experience. Good luck with the amnio on Thursday make sure you have lots of rest after. 5yo and dh will have to cope between them!! Will be thinking of you.....