DS risk 1/60 and am over 40. Anyone else had similar risk?

[Oldasthehills]

I had a nuchal scan last week which looked good (nuchal measurement 1.3mm) but with my bloods and age my risk is 1/60 of DS.
The staff nurse who called me acted like this was terrible news, and obviously it isn't great but I have medical friends who say this level of risk is not too surprising given my age.
I'm going to the Fetal medicine centre in Lond for cvs this week depending on what their risks say.
Just feel very odd and nervous about the cvs hurting and the risk to this much longed for pregnancy. I have one ds7, had one mc, and this is the first time I've managed to get pg since then! It took three years to get pg with ds!

Do many people miscarry after cvs really? Some people say that they quote 1% mc to cover themselves but that it is actually quite rare.

Would love to hear from anyone who's been through this!

thanks all!
not great news, went to the wonderful FMC and got a higher risk today, 1/34. My bloods were the main cause of risk added to my humungous age!
So we're having the cvs this week.
I haven't decided finally what we'd do if it's pos for DS. But dh and I just want to know now and then we can start to digest our options. We're trying to now but it ain't easy.
Feel very sorry for myself and sorrowful! Trying to cheer up but it's hard. The little thing looked so adorable on the supersonic scan though. A real little person!
Thanks for all the support and it is really helpful to read such a range of experience.

oldasthehills, i'm sorry this is proving to be rough for you, hope all goes well, xxx

which fetal center are you in?

Donbean - my fingers are crossed fro you.

OldAs...I went through something of what you are going through as my 20 week scan showed 'soft markers' for trisomies which are generally considered incompatible with life, as well as those for DS. I did decide on amnio, because of the 'non-viable' trisomies, but also did lots of research into DS and children with DS - which actaully had a big impact on DP's understanding. Anyway - I vowed that were I to get pg again I would have CVS earlier rather than amnio later - for lots of reaso0ns to do with the advancement of the pg etc.

For the sake of accuracy, can I just say something about the baseline statistics to do with age? especially in aiti's post? Once the tests have been done, the chance is the chance - it makes no difference whether it is typical for the age of the woman or higher or lower than average at that age. The chance IS higher over 40 (I was over 40 when I had DS) so more likely to come up shorter oddds, but those odds would carry the same chance of a child with DS whether you were 25 or 45 - I don't think it makes it more or less re-assuring that your statistics are in line with your age, or not - if you see what I mean. I don't mean to be stark , but i think it's important that we use statistics accurately.

But mostly, OldAs, you have my huge sympathy...the possibility followed by doubt and worry if your position is not clear is very very upsetting.

Almost this time 6 years ago at a 20 week scan I was told my unborn child had a hypoplastic left heart. We were then referred to Harris Birthright trust for fetal cardiac scans. ON doing the scan we were told our daughter had a serious but operable heart defect that had a very successful outcome - unlike hypoplastic left heart - it did not mean lots of surgery.

At the time the fetal cardiologist also told us that if our child was born without down syndrome it would be incredibly rare. he then offered us an amnio to be done with Prof. Nic. We refused because for us it would not make a difference to the outcome. At this stage I was 22 weeks pregnant with a little girl and we knew she was part of our family.

Our eldest dd(1) was born under 6 years ago and yes she has down syndrome. At 8 weeks old she underwent two open heart surgeries to close the holes in her heart. She is now a very happy healthy almost 6 yo.

We now have three daughters - and dd1 is as much a part of our family as the others. She has always been very easy to care for - in terms of day to day care was much easier than dd2 who is nt. Dd1 is idolised by dd2 who wants to be just like her. In turn dd1 adores her two sisters. She recently started full time school - the majority in mainstream with plans to transition to full time mainstream school. THere are pics on my profile. Funnily the kids at school love her - all want to sit with her and be her friend. Her two sisters have not missed out by having a sibling with special needs in any way.

Something that really annoys me about nuchal translucency screening is that so often people are not told that a higher chance as in 1 in 60 may not be indicative of down syndrome. In fact I have met a number of mums who were given results like 1 in 1500 and gone on to be the one. The difference between them and me - their child did not have a heart defect. In researching nuchal translucency screening I learnt that a higher result can be indicative of a number of conditions - such as heart defects. What I find amazing - when i mentioned this when having my nts with dd3 - everyone challenged me on this - despite it being written by Professor Nicholaides!! ( will try and find you the link). I know of a mother was given a high result - she went on to not have a child with down syndrome but another condition.

In my experience of people across the spectrum in terms of ages and abilities - people with down syndrome are able to live independently - they do marry, they do work, they do very well in mainstream schools.

I can't imagine not having dd1 in my life.

oops I was 34 when I had dd1 and had dd3 at 38. My general result prior to my nuchal translucency( at 38yo) was 1 in 56. We decided to have one this time due to learning recently that dh had a congenital heart defect which was discovered at 44yo!! So life really does not offer any guarantees.

eidsvold, do you have any pics of all 3 dd's? i'd love to see them, x

Good luck oldasthehills, whatever you decide. xx

Good luck oldasthehills - I do know what it feels like to be in your situation. My awful 1 in 2 chance and turned out all is ok....blips in the scan and screenings (especially the bloods) do happen. Apprently my bloods, combined with old age where ludicrously bad..yet it proved to be ok.

Thinking of you x

Oldasthehills - I had an amnio two weeks ago because of elevated risks from the triple test. It did hurt but we paid privately for expedited results - I believe you can also do this for CVS - it costs about £100 and we got our results in 36 hours so we didn't have to wait two weeks.

In our case we decided we needed to know because our daughter's life would also be affected by the outcome and also because once you know there is a risk, if you don't find out, you spend the rest of the pregnancy worrying.

However, one thing I do know is that 1 in 34 means 33 out of 34 pregnancies have a good outcome.

Best of luck to you.

I had the cvs at the FMC this morning. It went well, the Prof was amazing, charismatic, reassuring, totally in command and with such a warm personality (could I gush any more?). I felt if anyone in the whole world is going to stick a bloody great needle into me I'm glad it's someone like him!

Thanks for all these posts. Eidsvold and disneystar I was so moved by what you both wrote. I certainly have not finally decided anything yet. I'm going to reread the whole of this thread later when I get back in, there is so much food for thought from all of you that I need to read it all again carefully now I'm over the panic of the cvs which was a little overwhelming.

Just have to wait a few days for results and take it from there. The relief is enormous to have just got through it I was so nervous.

glad you're ok oldasthehills, x

bundle - will put some on later for you.

evening all. Can't sleep, keep waking up this early and mind racing and can't get back to sleep.
Quick cup of decaff tea and iron a couple of things and see if I can crash out again....

hope you managed to get some more sleep in. Not helpful when pregnant and not sleeping. Take care.

thanks eidsvold, what gorgeous girls!

aahhh bundle they get their colouring from their dad - I am dark with a brunette with dark brown eyes - and tend to look more like the nanny than the mum .

I go Kayaking with a man with Downs Syndrome. He lives life to the full. You could have a baby and then they could develop meningitis or encephalitis or something else could happen leaving them with a disability and you as a carer. Having known many people with various disabilities I feel quite concerned with the way that tests are provided as a matter of course. Tests cause women anxiety in what should be the happiest times of our lives. Doctors are conditioned to consider disease and dysfunction rather realise the potential for a rich fullfilling life in every human being. Whatever happens when you have a child there is always the worry about how they will cope and manage with life.

So welcome to the world of worry!!!

I agree Poohbah.

This child was born healthy. In fact, she was healthy until quite recently. All that happened is she was in a bad car accident.

The photo doesn't show it, but she can no longer walk on her own and has a lot of brain damage.

itcouldhappentoanyone