1:5 risk of Down's given...hand holding and advice/experience needed,please

[AngryBeaver]

I had a thread the other day after I had a call from the midwife saying she was concerned about a few things on the scan. Nuchal fold at 3.4mm and no nasal bone present. I had bloods done and just got the results. 1:5 chance. I am in shock. I had convinced myself after reading loads of positive similar stories,that it would be ok.
The mdwf is sorting an amnio out tomorrow morning (I am not in UK,it is night time here) I have to travel 3 hours to have the amnio done.
I just feel this is not going to end well.

Sorry to hear that AngryBeaver. Is anyone going with you tomorrow?

Hi Angrybeaver, I'm so sorry you have had this high risk given to you. I had a 1:15 in 2010 and it really floored me. The nuchal fold had been 2.6mm and I'd done some research after the scan and convinced myself that this was fine in itself so the 1:15 news a few days later was a real blow, it hit me quite hard.

I went on to have a CVS which, while not the same, is not dissimilar to an amnio. But for me, it was the emotional side that was the hardest, I felt absolutely desparately miserable.

I was convinced it wasn't going to end well. None of my results (bloods, nuchal fold, age) were good, some (bloods in particular) were awful. I didn't think all of those things combined could equal a good outcome. But it did. My little boy is now 14 months old, and causing absolute mayhem for his big brother.

I really do hope for the best for you too. x

I know a story of someone who was given risk of 1/3 and the baby didn't have DS after all. I can't promise you'll be in the 4/5, but I think your odds are still mostly against. It's something to cling to.

For me amnio was briefly quite painful & I did have painful aches for days afterwards, too. Not severe pain, and baby didn't miscarry (he's starting school soon :)). So don't panic if amnio isn't merely "uncomfortable".

Do read up on the implications, so you can feel confident with whatever choices you make going forwards.

Sorry,she is going to ring tomorrow to try to organise an amnio asap,but I don't know when it will be.Sooner the better. I've just spoken to my friend who is a gp and she was pretty frank. She told me she couldn't lie to me and that it was unlikely to end well.
And then I'll have to decide my next step.
Am just sitting staring into space. Just feels all the more unfair as this is a much wanted baby,we lost our last baby at 14 weeks.

Well, shame on your gp friend! It IS likely to end well, in fact there's an 80% chance of it ending well.

Good luck! I've been through this as well and although I had better odds it was still horrible.

Xx

Well,I thought THIS part would end well. I did not think I would get odds anywhere near 1:5.

Presumably your GP friend does not have access to your notes, scans etc. and is not an obstetric specialist. 1:5 is 20%.

I'm sure the waiting is absolutely awful :( Try not to do too much Googling!

Sorry, didn't mean to upset you. I know it doesn't look good, just wanted you to focus on the fact that the odds are still in your favour.

No,but she's served her time in obs/gyne...she was just being straight with me.

Every doctor will have done some time on obs/gynae :) I'm sure she was trying to be helpful but it's pretty obvious that anyone in your situation will have already decided that the absolute worst-case scenario is the only conclusion. For every 5 women in your situation, 4 will be thinking the worst and everything will be fine for them. It doesn't make the waiting any less painful though :(

I know. And I know I should be positive.I just seem to have awful luck...I am not kidding.You wouldn't believe it if I told you. So I can't help thinking if there's 1 woman in 5 that it will happen to,it'll be me.
I know how negative that sounds,but seriously dh and I can't believe some of the shit luck we've had in the last year. I really try and think "It'll be fine" I did with the bloods,I was sure it'd be ok.But when the mdwf rang I just thought,you have got to be fucking kidding me...not again?
Obviously,I am hoping with every fibre of my being that the amnio comes up good for us. Fingers crossed

You don't have to be skipping and jumping but don't panic either. This is a completely separate issue to everything else that is going on in your life.

If I were you though I would be on the sofa wrapped in a slanket, munching chocolates and googling the most awful details I would possibly find. It's just a natural response.

I am on the sofa with a hot water bottle but have gone off chocolate...it tastes like fish. Have spent much time googling,not helped much.It's all just chance isn't it?
Anyway,I'll have to go to bed now morning sickness is kicking in...even though it's 10.15 pm

You know, you sound just like I felt. I've had some rotten luck in the last few years, and I remember thinking that there was a time when I was sure that things wouldn't happen to me, but I'd learnt that it can and does happen to me. You lose that naivety.

I think your GP friend is just trying to prepare you. My motto is to hope for the best but prepare for the worst, and that's what I try to do when things like this come along. I prepared myself by researching termination, what options I'd have, where I could have it done if I decided to go private and how much, so that should I get awful news and decide to terminate I'd be able to act on it on autopilot. That sounds really negative, but it was the approach I needed to take.

Chocolate that tastes like fish!

I just wanted to wish you good luck; but also to say that the worst case scenario may not be as bad as you're fearing.

I've known a lot of children and adults with Downs, and, on the whole they've been lovely, happy people. They have challenges to face, and many for their parents too, but they and their families are not doomed to a painful, horrible existence.

My friend was given a 1 in 3 chance. I was pregnant at the same time, and genuinely wished that, if one of our babies was affected, it would be mine (I chose not to have any tests). I knew we'd cope; she would too, but in a different way, and it would be a lot harder for her. Our daughters are both fine, and very good friends.

If you are in the 20%, a termination may well be the best option for you - just don't think of it being the only option. Hopefully you won't have any decisions to make, but if you do, make sure they are your decisions and not just based on what is expected of you.

I'm really glad I didn't suffer from chocolate tasting different; it was bad enough having to give up the alcohol!

I uswed to think I could cope with a ds child.But know the chance is here,I know we can't.I have 3 children 2,4,6.
I am on my own on the other side of the worls,with no family support and not many friends. Dh works long hours.
I couldn't do it...and I don't think I want to.
The chance of medical problems,the 1:1 supervision,the strain on the family and the child that doesn't grow up.
I can't bear the thought that when dh and I are 50/60/70...we would still be responsible for a child

Hey AB no advice I'm afraid but thinking of you this morning.

Sorry to hear - I know exactly what you are going through. Last week I had my 12-week scan, and after an hour of enjoying our beautiful baby, we were told that a risk of Down was 1:7. I went straight for CVS, which fortunately was performed almost immediately. It is difficult to describe what was going on in my head for the rest of the day, and the next day, until the call from the hospital. I tried to concentrate on the fact that we odds were still on our side, but you don't really think that way when seeing such risk. I also tried to think, that whatever happens, it was better to find out now than after the baby was born. We were extremely lucky, because CVS results came back normal, and the early anomaly ultrasound nest day also did not show any major anomalies.
The odds are odds, and they are still on your side. 80% of chance all will be good. I don't know what decision we would have made if we were less lucky, but I don't think you need to make it before you get the results. All the best for you! Odds are on your side

Just offering a hand to hold from over here. I have been in your situation, albeit a different condition, and I know the utter agony of being told your baby is not well, and having to make the hardest decisions of all. Of course there is always hope but you're doing the right thing to consider your feelings in advance. Sometimes, agony as it is, a delay in testing and results can help clarify your feelings. Our family are on the other side of the world too, incidentally. Feel free to PM me. This organisation is wonderful www.arc-uk.org/ albeit UK based but I'm sure some of their literature is available electronically.

Sending you so much love and strength and I am very sorry you're having to tread this path.

hi whatshesaid thanks

daluze You were really lucky to have had the tests so quickly. What is the difference between a cvs and an amnio? So glad your baby was well.

prettyfly thanks so much,I'm sorry you have had to go through that. Thank you for the link...I will give it a look x

I had 1 in 3 with one of my twins. She's now just gone off to school complaining about exams and making plans for the weekend, a healthy happy 13 year old.
Take it one step at a time, DS is not inevitable.
I know how you feel, it's so terrifying, you will get through it somehow. X

It's amazing the amount of people who have 1:3 odds,both here and a few in rl...although it should comfort me,it actually makes me feel even more like I will be the 1! I really hope I'm wrong

There is no major difference between CVS and amnio for you. In CVS, the piece of placenta is taken, in amnio - some amniotic fluid containing the cells. The genetic tests are exactly the same. Whether you get CVS or amnio depends on how far you are in your pregnancy, CVS is done before 14 weeks, later - amnio.
It is usually said that CVS has a slightly higher risk of miscarriage, but the ms risk for both are overestimated, it is really negligible, esp if the procedure goes well.
Fingers crossed for you and your baby, thinking of you...

Hope it goes ok, AB, and remember, you don't need to justify or explain any decision you make if you do have to make one. Kia kaha.

Kia Kaha AB x x