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Antenatal tests

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Original poster

Very High Risk Downs and Terrified

45 replies

Cherrybug · 01/10/2010 09:43

Hi everyone,

I got the result of my bloods this week and have been told we have a 1 in 13 chance of a baby with downs. We have gone round in circles since, mostly in tears and finally agreed yesterday to have an amnio, booked for Monday next week. I am absolutely terrifed - of the procedure, of the risks and of the result. I have such an ominous feeling that it will come back positive as from the beginning of this pregnancy I've felt things werent quite right. My OH says that its just fear and worry and not real - my mind playing tricks on me, but I dont know, I have a healthy 2 1/2 year old and never felt like that with her pregnancy.

I'm so scared. Has anyone had an amnio and its turned out ok. Are they painful? I'm so worried about the risks involved. I know I couldnt get through the pregnancy if I didnt have it as I'm in constant turmoil, we both feel we need to know so we can make a subsequent informed choice. I feel that 1 in 13 is just so high and I'm 36 so age couldnt have thrown it off that much. I feel we are in a living nightmare where we have no control over anything and every single option is loaded with fear and worry. I just keep thinking that my bloods must have been really abnormal and that we should expect the worst :( Cherry

OP posts:

maddylou · 01/10/2010 09:52

Hullo,yes I have had 4 amnios,a long time ago now.One had to be redone as the cells did not grow properly-I went on to have 3 healthy children and feel very luckyone was born prematurely some time after the amnio--do not know if there was a link or not.I made the decision to have them as I already have a disabled sibling.I do not remember them being painful exactly more a feeling of pressure and stressful as you have to keep still.Good luck will be thinking of you

MrToad · 01/10/2010 09:59

Hi Cherry,

I'm sorry to hear your news, have a very un- mumsnet hug. I've no experience of this but just wanted to say good luck for Monday. Just remember that there is a 12 in 13 chance that your baby DOESN'T have Downs, that sounds more positive doesn't it?

Toad

maddylou · 01/10/2010 15:10

bump

Original poster

Cherrybug · 02/10/2010 09:52

Maddylou,

Thanks for bumping and for your reassuring words. I am very scared of the amnio and the risks but I know I've made the right decision as the risk is so high. I am certainly expecting the worst as I just feel there is something not right. However still hoping.

Thanks MrToad for your comment also, it helps to read such supportive words.

Cherry

OP posts:

Original poster

Cherrybug · 02/10/2010 09:53

Also Maddylou, so glad that your children were all born healthy. It is such a horrible experience to go through.

OP posts:

ninedragons · 02/10/2010 09:56

I've had two, both fine.

It doesn't hurt at all, though I would advise you not to look at the ultrasound screen if there is one facing you. It's more of a small tug, and over very quickly.

Book the day off work and be kind to yourself after the amnio - have a nap and doss around watching telly.

domesticsluttery · 02/10/2010 09:58

Hi Cherry, really sorry to hear you are having a bad time at the moment. When I was expecting DD the blood test results came back as 1 in 3 for DS, which was very frightening. We made the decision not to have an amnio, but this was due to the fact that even if we had a positive DS result we would not have termionated. So it seemed silly to take the risk of miscarriage, even though that risk was very slight. It was a very worrying few months, but when she was born she was immediately checked for DS and given the all clear.

As MrToad said, remember that a 1 in 13 chance of having DS means a 12 in 13 chance of not having.

Good Luck

domesticsluttery · 02/10/2010 09:59

Sorry, just noticed my typo, it was 1 in 30 not 1 in 3.

flamingtoaster · 02/10/2010 09:59

I had two amnios a long time ago - both babies were fine. It wasn't painful and it was over very quickly. The first time no-one told me I should rest for 24 hours after it so I went shopping in a huge shopping centre for a couple of hours to take my mind off waiting for the result! After the second amnio I was told to rest for 24 hours so I did. Good luck for Monday.

SmacsGonePotty · 02/10/2010 10:04

The amnio is uncomfortable but not painful. The risk of miscarriage is very, very small.
I was given 1:55 for Downs (just on blood test) and my baby didn't have Downs. (I was 35 BTW when I had amnio and 36 when I had DD2
Please bear in mind that if it is just a blood test that gave you this high risk they are incredibly inaccurate. A combined scan and blood result gives a better prediction but it is still just a prediction.
It does turn your world upside down and the 3 day wait for the first set of results is also a nightmare.
Like you I just wanted to cry the whole time.
Call up ARC if you need someone to chat to about it all. I found them very helpful ARC
Have you spoken to anyone in RL about it? Was your MW helpful? My MW was lovely as was the MW at the hospital. My DH didn't want anyone else to know about it but I needed to talk about it. I spoke to my Mum but I regret not being able to talk to my best friend about it.

nightshade · 02/10/2010 10:06

had an amnio for dd2 who is almost one. although not sore, it is uncomfortable and a bit 'icky'.

had no ill effects, no scares and a perfectly healthy baby.

as my consultant asked, did we need to be sure? we agreed that we both needed to know conclusively what lay ahead. glad we did, it took tha pressure off the rest of the pregnancy.

Mishy1234 · 02/10/2010 10:11

I've had 2 and both were fine.

Agree with others that it doesn't hurt, it's just a bit uncomfortable. I found that closing my eyes and concentrating on slow breathing was helpful, as you do need to stay still.

The wait was quite hard, but it did mean we had a definitive answer about what we were facing and we could enjoy the rest of the pregnancy without worrying.

carciofi · 02/10/2010 10:27

Also had an amnio as I was given a high risk (can't even remember what it was now) and we decided that wanted a definitive result.

I was also 35 when I had the amnio and 36 when dd was born. I looked away when the doctor put the needle in and it really didn't hurt me. The doctor and midwife were very kind. I took a few days off work and rested. I was terrified (DH also did not want anyone to know so couldn't talk to anyone else about it) and it was a long three days waiting for the results, but dd was fine and it gave me great peace of mind.

The added risk of miscarriage after an amnio is low, 0.13% (Washington University School of Medicine, 2006).

I will be thinking of you.

lowrib · 02/10/2010 11:43

I was told we had a 1 in 18 chance, based on the blood result.

My heart goes out to you. I remember how awful I felt, from the moment they called to say there might be a problem until we got the all clear. Although the chance was 'only' 1 in 18, I felt very pessimistic about it and it was an awful time. However, in reality these odds are massively in your favour. Do try to hang on to the positive, the chances are everything is OK.

I know it all suddenly seems to become a game of maths - but here are some more figures just in case it helps. A 1 in 13 chance is actually the same things as less than a 8% chance. Or put another way, you have more than a 92% chance of everything being OK.

Our result came back negative for Downs, despite the horrible feelings of doom I had. It turned out that the blood result had actually been nothing to do with Downs - it was high as a result of a 'notch' on one of the arteries in the womb instead. I'm really grateful they found this, as then I was then able to be treated for it very easily, and my healthy baby boy was born over a year and a half ago now.

A friend recommeded the organisation ARC (Antenatal Results and Choices) to me at the time. Actually in the end I never used them because I only learnt about it the day before my results came through, but they're meant to be good, and you can call them for advice about anything to do with antenatal tests.

www.arc-uk.org
020 7631 0280

Sending you un-mumsnet hugs xxxx

sarah293 · 02/10/2010 11:54

This reply has been deleted

Message withdrawn

DuelingFanjo · 02/10/2010 11:58

I had an amnio very recently and it was fine. Just try to stay as relaxed as you can while they are doing it. I didn't find it at all uncomfortable and just made sure that I had a couple of days off to relax in.

My results came back fine. I would have terminated had there been a chromosonal abnormality but obviously it's down to the individual. We were given the preliminary result within 48 hours.

I second the ARC suggestion, though I didn't use them my SIL found them really very good.

IUsedToBeFab · 02/10/2010 11:59

I hope everything works out for you but having a child with Downs syndrome is not the end of the world.

RememberToPlaywiththeKids · 03/10/2010 07:47

Hi Cherry,
I'm so sorry you're going through this - the anxiety is absolutely awful isn't it? I can so sympathise with you.

I was given a risk of 1 in 5 (I'm 39) with the combined test and that has just been upped to 95% sure baby has Down Syndrome having had a cardiac scan as they found a hole in it's heart :(. We opted not to have an amnio so I'm working very hard to start enjoying this pregnancy and to not fret about how bad / sick baby might be. ironically, I was worried about 'the Down syndrome thing' but lots of reading and talking to the down syndrome society and people on here have helped hugely and now I'm just consumed with worry about the extent of the cardiac defect and whether or not we will have a frightful decision to make. Next scan is on tuesday. I find myself thinking 'if only baby just has down syndrome with the tiny hole in it's heart, then I will be very happy and can look forward to being his mummy without all this worry and sadness.

RememberToPlaywiththeKids · 03/10/2010 07:55

I don't know if this helps but here's a link to a thread I started to chat to parents who have a child with DS.

Original poster

Cherrybug · 03/10/2010 14:34

Thank you everyone for your kind words which help so much. It's such an awful time.

Remembertoplaywiththekids - I'm so sorry to hear of the worry you are going through too and really feel for you. I'm glad that you have made the decision that is right for you and I hope you find that the rest of your pregnancy becomes easier and the next scan is very reassuring for you. It sounds from what you've said that no matter what happens, your baby will be born under a lucky star to have such a loving mummy.

I feel glad, despite being so scared that we have chosen to have the amnio as we definately need to know as our decision after that isnt yet clear to us. I'm certainly preparing for the worst as I just feel very pessimistic about things but I'm trying to think that the odds are in our favour and keep my mind busy.

Thanks again for the support, it really helps to hear others have been through this and things have turned out good for them in the end.

OP posts:

laughalot · 03/10/2010 14:54

cherry bug iv sent you a personal message on your mumsnet inbox x

Chynah · 05/10/2010 18:09

Cherry,

I had a 1:12 risk with DD and chose to have a CVS. The procedure was fine if a bt uncomfy - the waiting for results howver is very hard. It came back all clear and she is now 6 months old.

Fingers crosed for you.

mowmi · 05/10/2010 19:13

Hello,

Sorry you are going through this - I remember how awful the waiting around was and the mind racing, all consuming worrying...

We had a 1 in 2 result due to bloods and nf measurement - our baby is absolutely fine.

I hope to read good news for you soon.

peckhammummy · 05/10/2010 19:44

Poor you. I know exactly what you are going through. I was given a 1 in 3 probability and it absolutely knocked me sideways. Medical science is a wonderful thing but I just think that human beings aren't equipped to deal with the information it sometimes provides us with.

We decided in the end to have an amnio (which wasn't too bad an ordeal) and thankfully all was well and on 29 July I gave birth to my gorgeous little boy.

Here are a few tips which I hope will help you through the next few days:

Try to keep busy so that the wait for results is less agonising. I threw myself into doing activities with my 2 DS's and on days when they were at preschool I made sure I was with friends.

My mantra was one step at a time. I wasn't going to make any decisions until I got the results of the test. I had always said that I would't have had an invasive test but somehow in the cold light of day with a 1 in 3 probability I decided I just had to know.

I think it was a self protection mechanism but I decided to expect the worst so that I would be pleasantly surprised if things turned out ok and would be a little it more prepared if there was bad news.

Waiting for the phone to go was just hideous. If you can, try to arrange a time for the hospital to ring your with your results. I would have been a jittering bag of nerves every time the phone went had I not known when they were going to call.

I also arranged for my dad to be with me when the results were being phoned through. Firstly he was able to look after DS1 & DS2 so that I could have a phone call in peace and secondly he would have helped pick up the pieces had I been given bad news.

I wish you the very best of luck and will be keeping my fingers crossed for you.

Original poster

Cherrybug · 06/10/2010 14:12

Thanks everyone for your comments and support. I had the amnio on Monday and I guess it went as well as it could. It was over very quickly and the doctor said she had a good clear sample etc. I didnt have any pain at all afterwards thankfully but I'm still very nervous about miscarriage.

So here I am 48 hours later and terrified of the phone ringing. They said 3 - 5 days for the results so I'm just waiting in limbo. It's a horrible conundrum, I want to know the results so the wait is over with but getting the results also mean that we may have to face a terrible time ahead.

Anyway,thanks again everyone xx

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