1/49 on triple test and terrified

[Mainer]

I'm new to Mumsnet, though after the last weekend, I don't feel new. It's already been so helpful as we've agonised over decisions the last few days and shed far too many tears than is good. My husband finally suggested I add my own thread and see if anyone had some positive words.

My blood screening test (triple) came back high risk; I am only just 35. Hadn't had Nuchal earlier on, not offered where I am. I found out today that odds are 1/49 (of having a child with Downs Syndrome) which sounds frighteningly high to me. We've weighed the 2% rish of Downs with 1% risk of amnio miscarriage and I decided I couldn't risk the amnio. So we're now facing a twenty weeks' wait. Any advice or helpful words?? I'm terrified, can't stop crying and am not entirely sure how I'll handle going back to work tomorrow. Thanks so very much for any help/hope offered.

Thanks everyone, for all of your messages and advice-- all very elegantly worded. I have dedicated time at the end of every day to sitting quietly and reading through any new posts. I am simply overwhelmed by the support and wise words; I have started to really rely upon and look forward to my 'mumsnet' time after a day trying to put worries aside.

Thanks, JustOneMorePlease, for your words. I know everything you say is so very true. With every day I am feeling less and less concern about the possibility of having a child with DS-- every movement and kick just reminds me that this is MY BABY, who is happy, alive and kicking right now, and that is all that matters.

Hairymelons, I'm thinking of you. I don't want to say I'm relieved that someone is going through the same thing at the very same time; I wouldn't wish it on anyone, but it's a comfort, certainly, to know one isn't the only one. I hadn't realised there was a possibility of a 34 week amnio. As you say, risk of early labour is quite a different thing. I can imagine that, by then, the uncertainty and desire to know might have intensified. At the moment, I'm quite amazed at how much I've been able to accept the silly number and get on, positively, with life. That's largely thanks to Mumsnet, I think!

Hi There - just wanted to suggest a scan at the Fetal Medicine Centre in Harley Street which might out your mind at rest, if you are anywhere near London. This is he private wing of the Harris Birthright Centre at Kings and run by the team that developed Nuchal Scans and CVS. They use extra markers and have the highest quoted rates of detection of Downs by scan alone, If you are past 13+6 it will be too late for a nuchal scan but they do incredibly detailed scans there and have the most hi-tech scanners. They look at extra markers like presence of nasal bone, heart rate, blood flow through the a heart valve, blood flow through the ductus venosus in the liver and would redo your hormone levels.

Even without the nuchal measurement this might be reassuring and put your odds up. Or if they can see that Downs is likely you will at least know and have time to adjust and prepare - and possibly habe a CVS or amnio to confirm - as you say it is the not knowing and waiting that is so awful. I have been there with both last 2 pregnacies and they are very good - really the experts in the field. The nuchal scan is £150, don't know whether it would be cheaper without the nuchla scan componenet. Out of interest, in my current pregnancy I had the combined scan at my local hospital which is just the nuchal and bloods which gave me odds of 1:1000 odds and also had a the combined test with the extra markers taken into account at FMC where my odds came out at 1:2000 odd. If your odds go up as a result of a more detailed scan it may be rassuring for you without having to do invasive testing?

"Antiseptic that penetrates the skin", was it? Like, all the way into the amniotic fluid? Surely you must be jesting.

Here it is:

A recent study, led by Keith Eddleman, MD, of
New York's Mt. Sinai School of Medicine, and published in the November issue of Obstetrics & Gynecology, sought to determine if amniocentesis still has the 0.5% miscarriage rate (one in 200 pregnancies) that it did 30 years ago, when the last significant research was done. Dr. Eddleman offered amniocentesis to 35,000 pregnant women; 3,000 women opted to have it performed and the outcome was the same for both those who had the test and those who didn't -- about 1% of the women in both groups miscarried.

In this study the amniocentesis-related miscarriage rate was 0.06%, or one in 1,600 pregnancies -- significantly lower than the 0.5% rate that came out of studies performed in the 1970s. Since then, there have been many innovations in amniocentesis safety, the most significant being the use of ultrasound technology during the procedure - doctors are able to view the baby and therefore determine where to insert the needle.

From here.

No, the screening midwife told me that the miscarriage risk is from infection because the needle is entering a previously sterile area. She also said that as ultrasound was now used there was no real danger of injury to the baby from the needle.

Apparently this new skin antiseptic penetrates several layers of skin rather than sitting on the surface, offers prolonged protection (can't remeber how many hours she said) and further reduces the risk of infection (and therefore miscarriage) to the extent that they haven't had one since they started using it.

Apologies if that isn't accurate, only said it to reassure OP that the 1% risk may not be set in stone and that it may be worth talking to her hospital to see what their record is like.

I asked the guy at the FMC last week and he said the cuurent stats for miscarriage after both cvs and amnio in their clinics has now been adjusted to 0.5% as well but they haven't published yet. He also said that at the time most people have CVS (around 11-13 weeks) the background risk for miscarriage anyway in any pregnancy is 1% because this is about the time that many conditions prevent the pg from continuing. And that the 1% stat is based on research done before they did the procedure under unltrasound (which I find astounding that they ever did this!). The guidelines also state that any mc up to 5 days after a procedure is attributed to the procedure even though it may have been going to happen anyway (not related to infection).

I find it interesting - still a huge consideration but I find it reassuring that the risk is coming down. Though the sooner they fine tune the non-invasive blood test the better.

hairymelons - A skin infection is easily treatable and would not cause a miscarriage. "Infection risk" after amnio refers to an infection in the amniotic fluid, not in the skin. There is no way a topical cream would reach the amniotic sac, and if it did, it probably wouldn't be a good thing for the baby.

Either that midwife didn't know what she was talking about, or quite possibly, she just wanted to put your mind at ease.

Hairymelons, just wanted to say that what your midwife said makes sense to me. I'm a nurse, and although I haven't had any experience with amnios with my job, I know that the introduction of contaminants from the skin is a major cause of infection with any invasive procedure. Also, many substances are capable of penetrating several skin layers, including certain antiseptics. So I would think an improvement in the antiseptic used could very well lead to reduced rate of infection, as your midwife said. All the best to you and Mainer

Was 40 when pg with DD2. Had 1/35 risk, after much soul searching, in v short space of time, had amnio. Cried all way thru , consultant lovely, kept showing me scan, pointing out positive points etc, and at end said 'well baby not bothered by that at all'. DD2 is the best gift ever after that altho she is so willfull, gobby and defiant! I love her! You will do what is right for you, we chose to go the amnio route simply so we could make plans, not because we did not want a child who may have DS. It had implications for our family and we wanted to be able to prepare. Risk is actually very low, both your risk factor and that of amnio. I hope you can reach a decision which will bring you peace.
x

Mishtabel - By definition, a cream that penetrates several layers of skin does not penetrate enough to reach the amniotic fluid, where the real danger of infection is re miscarriage.

You are a nurse and you don't understand that

Besides, even if there was a cream in the world that would penetrate into the amniotic sac, no sane doctor would touch it to a pregnant woman's belly.

CoteDAzur, with all due respect, I think you misunderstood me. Firstly, neither myself or, I believe, Hairymelons midwife, suggested the antiseptic penetrates the amniotic sac. That would not only be impossible and undesirable, but also unneccesary The role of the antiseptic is to remove contaminants from the skin so that they are not introduced into the amniotic fluid via the needle - which, I'll say again, is a major cause of infection with any invasive procedure. The antiseptic is not meant to treat infection or kill bacteria that is already in the womb (no one has claimed that it can). I cannot explain it any simpler, sorry (however I think most people get it, nurse or not). Anyway, just wanting to reassure Hairymelons that what she was told by her midwife made sense to me. All the best

PS: Continued well wishes for Hairymelons and Mainer xx

Keep it in perspective - a 2% risk of downs syndrome is actually really low. In another context, a 2% risk of something happening would not be enough to worry you. I think you are doing the right thing not having the amnio - I did and wished I hadn't, even through the results were clear. It was painful and traumatic, and the worry about the risk of MC after the amnio was much worse than the worry of downs before it! Just focus on the 98% chance of everything being fine. I would bet on those odds any day - and so should you.
PS - to CoteDAzur - I had my amnio done at a massive and very high tech teaching hospital, and the current rate that they quote - which is lower than most, is a 1 in 150 risk of miscarriage based on their own clinical experience in the past 18 months.

Thanks everyone, for your encouragement. I have not gone for the amnio, despite lots of positive and reassuring words about the experience. . . in the end, I couldn't face the anxiety of worrying about even the slimmest chance of MC. Having good days and bad days depending on stress and sleep levels, I think. I am trying very hard to visualise a future with a son/daughter who has DS AND a future with a son/daughter who does not have DS. I can visualise both and, so long as my child does not have very traumatic and life-threatening health problems, both promise equally happy, rewarding, fulfilling, gorgeous days ahead.

Have, unfortunately, added another worry to that of DS though. During my last appointment, my consultant looked at the actual hormone levels involved in the blood screen. My AFP was, I think, quite normal (1.20 MoM). My HcG, however, was through the roof at 4.14 MoM which is what put my risk up for DS. But apparently, high HcG is ALSO related to IUGR (intra-uterine growth restriction) with all its attendant developmental worries. My consultant will have me in for growth scan checks every two weeks, from 28 weeks. I am now at 22 weeks. My 20 week scan was fine (no soft markers, heart looks fine-- all very reassuring). But, I am now also very worried about the 28 week scan and what it will reveal. Anyone have any experience of similarly high HcG levels? Thanks again for all words of advice and encouragement!

Just wanted to post the happy ending to this story . . . after learning we were at 'high risk' for Downs Syndrome (1:49) after the blood screening tests, we have been waiting, living with the uncertainty, since April. We knew we would love the baby that came along no matter what. But I will certainly confess that the last few weeks were the hardest time of my life. It was undeniably an inexpressibly huge relief when our son was born last Monday, entirely healthy. It's only one story, and I am very aware our ending could have been very different, though I believe it would have been equally, but differently, happy. I do hope this happy ending gives a few women encouragement that, though things look really bleak, everything can still be absolutely fine. 'The things we worry about most, are most often the things that never happen' were a friend's wise words that helped me through the last several months. . . and proved true, in this case.

Mnay congratulations on your son's birth

Delighted to hear your good news. Had actually been thinking of you in the past few days! (lurker ).

Wishing you and your DH much joy with your lovely Ds.

So lovely to hear back from you, Mainer. It must have been such a worrying time for you. We had a heart scan at 18 weeks that looked fine and I also had the quad test done- the downs risk came back as 1/28,000 which was a bit different to the 1/11 we were given after the nuchal scan- so I had almost forgotten about all the worry and the heartache. I can't imagine going through the entire pregnancy with it hanging over me.

I'm so pleased your son has arrived safe and sound and in good health. Congratulations and love to you all :)

Am delighted for you. Have thought about you since your first post.

You have obviously had to tap into great strength in the last few months and thankfully you have come out the other end and can now settle down to enjoy parenthood.

Congratulations to you and big well deserved hug been sent your way!!!!!

Congratulations Mainer, I too have been thinking of you recently, wondering if your little one had arrived. I have a month left before my little ones due, with our 1 in 5 risk, what will be will be, I know, but it is playing on my mind quite a lot at the moment.
Congratulations again!