Bad news from DS sreening

[evansmummy]

I posted in pregnancy to start with but have popped over here to hopefully get some support.

Had scan and bloods done last Tuesday, and Thurs got a call to say we were high risk. 1:23 chance due to 3.4 NT and blood counts that are high on one and low on the other. Decided on amnio but as I'm only 13+3 have to wait til May 5th, nearly 2 weeks.

I can't stop crying, it's really a shock, plus we'd told ds about the baby after the scan, and now wish we hadn't in case, well in case whatever.

It feels like a long wait, but I am trying to keep myself distracted.

Thoughts are with you. Hope the 2 weeks passes quickly and you receive the support you need whatever the results are. xx

Can you do CVS at this stage?

(Sorry you are going through this )

There are lots of people on here who have been in your situation and I'm sure you will get great advice soon. I had my results a week ago and came back as 1:240 which was worrying enough, so I can understand a little of how you're feeling.

Remember that the odds are still absolutely in your favour with much more chance of all being OK than not.

I can really recommend calling Antenatal Results and Choices on 020 7631 0285 - they are a charity, completely impartial and are the experts on the screening tests and next steps like CVS or amnio. I felt really helpless when I first got the results and didn't really know what to do for the best. ARC and fantastic advice from this board made a huge difference.

I found them so so helpful - the MW who called with my news was not particularly forthcoming with information and just told me to decide to go for an amnio or not. I had a great chat to them and understood the tests and risks much more which helped me to make an informed decision.

I don't think they'll be open again until Tuesday but think they'd definitely be worth a call to help you get through the next couple of weeks.

Hope the time passes as quickly as possible before the amnio, go easy on yourself.

I will think about calling ARC next week. I was lucky to have a lady at hospital who was very helpful and good at explaining things, plus, as it turned out, the midwife who did my booking appointment was doing some training in screening results meetings so I had a familiar face there.

Marie, I have up until Thursday to do a CVS, but with the increased risk of miscarriage, we decided to wait for the amnio. Two weeks seems like a long time, but it's not that long now, 12 days in fact, and I have lots planned so am hoping that will be enough to get me by.

I feel like an emotional wreck. It is not what we were expecting at all, and I'm not that old (33)! We've waited a long time for this baby, our ds will be nearly 7 by the time this one is (hopefully) born, and I can't bear the thought of it not turning out how I wanted it to. I've had a hard few years and the stress of this is proving hard on top of what I'm already dealing with.

Did not even know this board existed, and I've been on MN for years! Am so glad to have found it and to hear positive experiences, even from those who in the end had a DS diagnosis. I would have amazing support around me, whatever we decide, but in the meantime, I don't want to tell anyone in RL (apart from my mum and best friend), so it's good to be able to vent on here. Thanks for your messages.

Marie, I have up until Thursday to do a CVS, but with the increased risk of miscarriage, we decided to wait for the amnio.

An amnio has a greater risk of miscarriage, I believe.

If you have some spare cash and are in the UK, can I recommend Prof Nicolaides? He really is the best. We went to him a few years ago, at that point he had never lost a baby during a CVS procedure (not sure about now, that was a few years ago).

evansmummy sorry you are going through this. I replied to your post in the pregnancy section and so I'm glad you've posted here too as people here have often been through the same thing.

First CVS does have a higher risk of MC than amnio. And the risk is different in different areas. Yes, CVS risk at Fetal Medicine Centre in London by Prof Nicolaides (if you live nearby and can afford £500) is lower than average but for example, in my local hospital in Scotland the risk is 1 in 50 whereas Amnio risk is 1 in 150. Plus there are things that an amnio can detect that CVS cannot and I believe there is a slightly higher chance of incomplete sample with CVS than amnio.

1 in 23 seems scarily high but there is MUCH more chance that your baby will be ok than not. Try to hang on to that if you can. I know how terrifying it is. I had a 1 in 13 risk for DS and had amnio. My baby girl didnt have DS but after the initial all clear from fast results something very rare came to light in the full results. This really is very unlikely and we were just extremely unlucky so not to worry you, just best I think to be prepared.

I hope the time goes quickly for you and yes, best to be busy. I found the actual amnio procedure much less awful than I'd anticipated and it was over very quickly. Let us know how you get on and remember there is lots of support here for whatever the outcome and handholding for the waiting. Good luck.

Thanks both for your posts.

Marie, in our hospital, amnio has less risk than CVS (amnio: 1 in 150, CVS 1 in 100) and CVS more risk of incomplete sample. I'm afraid we don't have any spare cash at all, not even the £180 for another NT scan and quadruple bloods (I checked!) so that isn't an option, sadly.

Cherry, I do remember you posting on my other thread. I'm less worried about the procedure than the results, obviously. I know it's all over very quickly and I'll have dh and bf with me, so I'm hoping it will be ok.

It's hard not to think about it. It has been in my dreams the last two nights, I woke up thinking about it and am having trouble getting it off my mind. I'm seriously considering staying away from MN cos being on here makes me automatically check my threads! But then I know I need the support. I'm a mess really.

Do you know what you would want to do if testing said your DC does have DS? Or is it not knowing what you would do stressing you out?

MrsGrotBag, I have no idea. I started off convinced that I wouldn't carry on with the pregnancy, now I'm not sure. I'm not stressed so much as depressed. I don't want a baby with DS but I don't want to terminate either. I just wanted a normal pregnancy. I want to hope for the best but last time I did that (something unrelated) I was well and truly disappointed and I'm scared of that happening again.

I had a NT of 4.6mm and a 1:3 when combined with bloods; I also waited for an amino, which came back clear. Your chances are still good, fingers crossed for you. Xx

I totally understand where you are coming from. I've just posted this on another thread (which you may have read already):

We were given a 1 in 5 risk and at 16 weeks were told that our baby had an AVSD heart defect. This clinched it for having DS in my mind although we didn't go for any invasive testing. For my own sanity I had to assume that baby did have DS so that I wasn't shocked later. DH wanted to assume the best when we were initially given the risk factors so had to go through 'the process' of getting his head round it when I laid it out for him that it was almost certain that our baby had DS (I went to the scan by myself while he looked after the other 2 DC).

Initially I was so sure that we were keeping our baby and then exactly the same thoughts and doubts that you have been having crept in to my mind. Over a period of about 4 days i went in to a frenzy of research, reading and talking to parents, healthcare professional and associations to make damn sure that I fully understood the kind of life that i would be 'sentencing' my baby to having. By the end of my research and coupled with my gut feeling (yes yes I know), I reverted back to my original position of being 100% behind the pregnancy. Yes I did have the odd wobble but I knew that I couldn't terminate with the information that I had been given. I am not judging anyone who does terminate for ds by the way.

Anyway - DS was born almost 3 months ago and so far, he has just been like any other baby, just a better sleeper! He's our 3rd and we're so in love with the little chap. He has open heart surgery in the next couple of months and having worked in cardiac surgery, I feel rather more relaxed about it than if I hadn't!

There are quite a few appointments at the beginning becuase they get the gold service of the nhs - they check everything and are totally wonderful. The appointments don't go on for long though.

Please PM me if you would like to...

oh and I'd had 2 MC's before this PG which I think made me all the more desperate for it to work out and I found myself panicking before each scan that they would find something incompatible with life and that I would have to terminate / go through early delivery etc. To me that would have been horrific (as I know it is for everyone who goes through it). I remember lying on the ultrasound couch hyperventilating and just wishing with every bone in my body that I could 'just keep my baby with DS', even though we didn't know he had DS for sure.

Thank you so muh for possting your story. I am so happy for you that your baby is well and you love him so much. I'm pretty sure we would feel the same in that eventuality. But it just isn't what we were counting on. My youngeset brother was killed in a hit and run nearly three years ago, we were trying for a baby at the time, and put it on hold as I fell to pieces. I've only just now felt ready to go ahead again so this was a blow, really. I realize we haven't had our results back yet, but I am preparing for the worst. I don't think we would terminate for DS, but that opinion seems to change almost hourly. It sounds awful, I hope you won't judge, but I would also sort of prefer that the baby have something that would take the decision out of my hands, iyswim. And then I feel awful for thinking like that. It's a roller-coaster.

Tuesday I'm gonna phone the hospital and attempt to bring my appt forward two days - I have tickets for a gig on the Thursday, my favourite band, and I don't want to miss it. I also don't want to go if I should be resting, so I'd like to get my resting done well before the gig. Fingers crossed they can fit me in. It'll be something to look forward to.

hey there,

firstly i just wanted to say that i'm SO sorry that you have found yourself in this situation.....it is the worst situation in the world, as everyone on this board was pregnant because they wanted their baby SO much. to have all of this worry and uncertainty, on top of the sadness of losing your little brother (i'm so sorry about that) must be unbearable.

i just wanted to say that we lost our little girl almost 4 weeks ago to DS and a large cystic hygroma. we have two sons (ages 3 and 1) and we had been ttc since june last year. we were lucky enough to fall pg in aug, but had a m/c at 9 weeks in october. then (again) we were lucky to conceive again quite quickly and found out we were pg on christmas day (best present ever).

we had an eventful pregnancy, finding out at 7 weeks there were 2 babies, but only 1 heartbeat. a follow-up scan the next week confirmed that one of the babies hadn't made it. i then panicked all the way up to the nuchal scan (which was at 13 weeks) - about 30 seconds of pure relief when the baby was ok, followed by a concerned look from the sonographer and we were referred to the antenatal diagnostics, to their counselling room. our babys nuchal translucency was 7.4mm and we had the bloods done immediately which gave us a risk factor of 1:5 for DS. we were devastated. we had always said we would never terminate for DS but having never been in that situation its all hypothetical. we booked in for an amnio but had to wait 2 painful weeks (as we were just outside the time limit) - that gave us the news that our baby did have DS. i was absolutely heartbroken. i just didn't know what to do for the best. we went ahead with a cardiac scan a couple of days later, which seemed to be ok but they were going to have us back again at 21 weeks.

i like you, was changing my mind almost every 5 minutes. i think deep down dh and i knew that for our family, our best decision would be to end the pregnancy - there were a huge number of factors that drove that decision such as our boys, our ages, our need to both be in full time work, our worry about what end of the spectrum our baby would be on, possible health problems and heart problems.......but it was the single most painful decision we have ever had to make :(

our little girl was born sleeping nearly 4 weeks ago, and there is not a minute in each day that i don't think about her, but i know in my heart of hearts that it was the right decision for us.

i think that is what i'm trying to say....it is such a horrible place to be in because there are feelings of guilt and "what ifs" and at the end of the day it has to be your decision alone, no one else can make it for you.

i truly hope that everything works out for you, please keep us posted.

sending you lots of love xxxxxxxxxxx

mrsbigz, for you. What a difficult time this must be for you. I don't think any of us can make the decision for someone else, but it helps, in a very sad way, to know that other people go through this, and get through it. I hope you have lots of support from friends and family, and are able to find comfort in your boys. I know I have realised what a gift our perfect ds (6) is. Pregnancy is not as cut and dried as it looks...

The only thing I can say is I know you made the right decision for you - everyone does - and I only hope I don't have any regrets whatever the outcome is for us too.

Thanks for being so brave in posting your story.

mrsbigz :(. I am so sorry, how dreadfully hard for you.

I absolutely do not judge people who make the decision to terminate and I do understand totally why some people do and some people don't.

I am so sorry if I sounded as if I was trying to push you in one direction. I really wasn't but wanted to just let you know of one outcome I guess and the topsy turvy journey that I took in my mind.

I guess I'm just saying that I sympathise and I know that it's frightfully difficult but I do think that you will find one decision sits better with you than another if that makes sense. I went through each of the scenarios in my mind and one of them let me sleep that night. Fitfully but I slept.

hi evansmummy, another one here who has been through a similar thing, very high risk factor and big nuchal measurement. Not sure what I can say that hasn't been said already, I can second contacting ARC and also staying positive, I've encountered lots of people on here who had a 1 in 2 chance of problems and still had a healthy baby.

You don't have to make all the decisions now, you don't need to know what you will do if and when you get a bad result, you just have to take it one step at a time and get through each day. And you're not terrible for wanting the decision taken away in some way, who would want to be in this position? When I was in your position I was praying they'd tell me either good news or that it was something completely incompatible with life, so the decision was clear cut.

The thing with risk factors is that in some ways they're completely meaningless - as a wise midwife said to me once, even in a 1 in a billion chance, someone's got to be the one. So you can't decide based on risk factors, or at least I couldn't.

If you know you'd never terminate, no matter what, then don't have the CVS/amnio. But if you need to know what you're dealing with, then it is the best thing to do. And it's really not as horrendous as it sounds! Over very quickly.

And don't worry about having told your DS - our DS1 knows that there was a baby in between him and DS2 who couldn't stay for long, he knows his name and he took it completely in his stride.

Thank you for your thoughts x
and mrsgrotbag, in the same way, I hope I didn't come across like I wad being defensive of my decision, or insinuating that you were trying to push your own decision - I wasn't and I know you weren't! It's just a horrible horrible situation to be in for anyone :(
xxxx

It's just awful isn't it? one's worst nightmare....

Mrs' bigz and GrotBag - I didn't at all take it that you were trying to influence my decision, not at all! I have taken strength from reading your stories, how you both came to your decisions, and it's made me realise (prematurely, I know I still don't have results, which makes my worrying seem completely redundant) that we will make the decision that is right for us.

Three things I've definitely taken to my heart on reading these messages this morning: 1. That if it comes to it, one decision will sit better in my mind than the other - I do trust my instincts as far as my family are concerned, and I will if I ever need to make a difficult decision about this; and 2. I don't need to make a decision now, only take one step at a time; and 3. My ds will take it in his stride too if need be. He coped much better with the death of my brother than I would have imagined, kids are more resilient than we think sometimes.

I can't thank you enough for your messages of support, and will definitely keep you updated.

Hi there. I just wanted to let you know that I'm in the same boat right now. Scan and bloods on Weds and then got the call just before close of play on Thurs to let me know 1:28 risk with 2.3 nuchal and bad bloods. I am going back in to see the consultant and possible CVS on Weds this week although they may encourage me to wait another week for amnio depending on what they see on the scan.

Since Thurs I have been on such a rollercoaster (was already massively stressed due to previous mmc only discovered at 12 week scan), managing to keep positive when distracted by friends who have no idea what is going on and then woke up yesterday morning and couldn't stop crying for several hours after some very vivid nightmares. I can only presume the sleeplessness and hormones aren't helping.

Thank-you so much to all the posts above which have given me a shot in the arm and some strength to get through the next few days. I have been unable to look at MN until now for fear of upsetting myself further but this has been such a supportive thread that I wanted you to know that your words and advice are reaching a broader audience.

DH and I had agreed in advance that we didn't want to carry a child with DS as we didn't feel it the right thing for our existing family. However, with friends and family with personal experience of DS or religious convictions, I have felt unable to talk to all but my very closest family. Fortunately they have been incredibly supportive and hardly anyone else knows that we're pregnant (although that's getting harder to hide and not being able to work out what to wear without people guessing and making comments, hasn't helped the stress levels) but I still feel incredibly isolated.

As my very dear sister said to me, "anyone who loves you will not judge you" and I am holding onto that thought to give me strength over the next few days.

Best of luck to evansmummy for your results. I'll be thinking of you too.

cassandraB, thanks for posting, and I'm so sorry you're having to go through this as well. Fingers crossed for the scan on Weds - 2.3 NT doesn't sound too bad to me, not that I know much!

We are in the same boat exactly about telling people, and my mum said the same things as your sister (they are very wise!). I'm not gonna feel like I need to justify myself, we will make the decision that is right for us and our family, irrespective of what people think. If they want to judge, they obviously aren't as good a friend as I thought.

I'm sending you some peaceful and strength-filled vibes. Let us know how you get on.

They sound like just the right kind of vibes and I'm sending them right back to you too.

I do believe that the more you understand about the complexities of life, the more you can appreciate its richness.

Hope you are managing to enjoy as much of these bank holidays as possible and spending quality time with your family.

I do believe that the more you understand about the complexities of life, the more you can appreciate its richness.

This is incredibly true. I once had a boyfriend who said 'It's all character building'. And this is true also, though not quite as eloquent .

Thinking of you.

hi there, i've made the same choice as mrsbigz a little while ago. i also had a late termination a few years ago as the baby had a massive heart problem. I just wanted to let you know that my daughters who were 2 and 4 the first time have taken both situations in their stride (I also lost a sister in childhood and they know about her too).

I didn't explain the complex nature of the decision each time as it's a bit much for adults let alone children but gradually as they've got older and asked more questions they have started to understand that we made a choice. I think children are very resilient and the fact that there were no secrets helped me recover. My oldest daughter asked some quite simple and direct questions.

I really like your statement cassandrab. dh says 'what doesn't kill you makes you stronger' and his (very religious parents who haven't judged us at all but i think they might pray for us) talk about the rich tapestry of life which I also like. I hope you both dont need this experience as part of your rich tapestry and that your results are good but if you do have bad news there is a good support thread in this section. x