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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

downs screening

26 replies

georgiegirl15 · 04/01/2011 09:29

Have just had call from midwife who said I have increased risk - 1 in 71 chance of downs. Help - what do I do? Do I risk amnio? If it says 100% accurate dont think I could get rid of the baby anyway as its our miracle baby I was told I wouldn't have. I had treatment for our DS who is almost 3. Any advice? Anyone in the same boat? At the moment I am completely devastated.

OP posts:

Are your children’s vaccines up to date?

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franke · 04/01/2011 09:49

How worrying for you. Just to give some perspective to such a bald statistic, 1 in 71 equates to about a 1.4% chance of you having a baby with Downs syndrome i.e. a 98.6% chance that the baby will not have it.

To give you my own experience, I never had any tests during pg because I would never have terminated the pg. A very thorough 20 wk scan was enough to show that the baby was viable (a limb count as I called it) and that there were no soft markers for Downs or any other problem that can be tested for. I am not the sort of person who would have benefited from knowing for sure that there were problems ahead - it would have made for a very stressful pg. These are the kinds of issues you need to weigh up for yourself and discuss with your partner. I'm sorry you are going through this and hope all is well.

wolfhound · 04/01/2011 09:49

Hi Georgiegirl. Not in the same boat, but just wanted to say that I sympathise a lot with you. I can't advise on whether to have amnio or not, but wondered if it is possible to find out accurate stats for your hospital (even your particular doctor)? I know there is an overall miscarriage risk of 1 in 100, but I would think that it varies a lot between hospitals and doctors. Also, another thought - which nuchal test did you have? I think their accuracy varies a lot. There are private centres (one in Leeds) which have vastly more accurate tests than the NHS ones. Don't know if any of this is helpful, but wanted you to get a quick reply. Thinking of you.

Besom · 04/01/2011 09:51

I've refused these tests when I've been pregnant because I've always known I wouldn't be able to have an amnio and wouldn't terminate anyway.

The advantage of the amnio is that it could put your mind at rest, or alternatively, you would at least be able to prepare yourself.

You need to weigh this up against the possiblity of losing the pregnancy as the amnio has I think a one in one hundred chance of this happening.

This is against the one in 71 odds they have given you. Which, objectively, is still quite a high chance that you'll have a healthy baby.

I believe that due to my age, I have a one in a hundred chance statistically of having a baby with downs, even before my individual chance is tested. I've still been trying to conceive, even knowing this.

Hopefully someone will come along who has been in the same position as you who will be able to advise. You must be feeling terribly anxious.

sarah293 · 04/01/2011 09:54

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Message withdrawn

GoldFrakkincenseAndMyrrh · 04/01/2011 10:01

I agree if you wouldn't terminate why bother risking a spontaneous termination by having amnio at this stage. You can ask to have amnio later when the baby would be viable if there was a problem and they had to deliver suddenly, which would be after the 20 week scan that might give a clearer picture anyway.

lostinwales · 04/01/2011 10:17

What Riven said, and Gold!Iwas in you position 4 years ago, my midwife actually phoned me on holiday as the best doctor for doing an amnio was going on holiday and she wanted to get me in ASAP! It scared me to bits, I'm very sorry for how you must be feeling at the moment.

I thought and thought about it but realised I would be very unlikely to have a termination purely for DS, we opted to just go for the anomaly scan and see if there was any more information to be gleaned from that. The sonographers knew my risk (1:100) and so were very, very thorough. The baby's nuchal fold was slightly large but apart from that there were no other soft markers so we just waited it out. What I had to say to myself was there were also many other things that you can't find out from ante natal screening, plus there is a risk at birth for problems, these are all chances you take going into a pregnancy and yet we all go ahead!

I would love to say put it out of your mind and just carry on but I know that it is very hard! It will sit there and rear up every so often but just try to enjoy this 'miracle' pregnancy. Courage and good luck, I'm sure you precious child will be very loved.

Oh and he's gorgeous by the way my one in a hundred! He also doesn't have to cope with DS, but I'm know he would still be gorgeous if he did, and a PITA, but he's nearly four so that goes without saying!

Original poster

georgiegirl15 · 04/01/2011 10:29

Thank you all for answering so quickly and thoughtfully. I appreciate the support. I have been on the interent looking up scans and clinics and alternatives and I think that I have come up with....wait and see. I will have the 20 week scan and will pay to have extra scans if needed throughout the pregnancy. Its my baby...My beautiful baby who is so much a part of our lives already. I have looked at the risks involved at amnio - if the baby was fine or had DS it could still miscarry and I dont want to take the risk. I will love this baby whatever as will my DH and family. If the baby has DS it will be extra special - naive yes, but I am also a special needs teacher and have worked with DS children across the spectrum and do realise what is in store if the baby has DS. I know how hard it could be. I'm not going in blind so to speak, I couldn't/wouldn't have a termination - I have watched it move on the screen and flex its fingers and suck its thumb! I love it already! Thank you for your support :) it is very much appreciated and when the baby is born I will post back to this thread and let you all know how beautiful he or she is! (I might find out the sex this time though!)

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lostinwales · 04/01/2011 10:36

Brilliant, good luck. I found out the sex that time round too, so getting a little boy without DS was a double shock. Sometimes I do wonder where my little DS girl is, as I'd pictured her in my head so often! When we were on holiday once and I saw a beautiful little girl with red hair and DS it was very hard not to run after her, I felt like saying 'you have my daughter!'

snowcake · 04/01/2011 10:38

I think your unborn child is very lucky to have you as his/her mummy given your experience and willpower. There is a subsection for parents making antenatal decisions like yours. It's in the same 'folder' as pregnancy, etc. Maybe someone there can help.

If you do not wish to have an abortion come what may, then I wouldn't risk the amnio but as others said wait it out and see if you can get more clues at 17/21 weeks.

Good luck!!

Besom · 04/01/2011 10:43

Good luck! I absolutely think you've made the right decision.

K12Mom · 04/01/2011 10:45

I have been in this boat. How pregnant are you? Are you too late for a CVS? Whereabouts do you live?

sarah293 · 04/01/2011 10:48

This reply has been deleted

Message withdrawn

Pingpong · 04/01/2011 11:01

Have you had an triple test or nuchal scan? The triple test is hugely unreliable on it's own. Mine came back as a 1:55 risk. I had an amnio as I needed to know what I was facing and if the results had been positive I would have been offered additional scans to check the heart etc and referred for more specialist ante natal care in a much more major hospital than my local area can offer.
The risk is lower than 1% and only some consultants are trained to do the procedure. I had to go to a different hospital 45 mile away as the consultant at my local one was away. They simply don't let anyone carry this out.
Anyway we are all different some women cope better with knowing what they are facing and others chose to wait it out. When I read your OP and you said you were 'completely devastated' it made me think you needed reassurance that amnio is okay. From my own experience I would say that amnio is okay - waiting for the results was hard but easier than waiting til the birth (for me anyway)

spaceal · 04/01/2011 11:10

georgiegirl - there's a few of us who have been in similar situations and facing the same decisions as you - have a look at antenatal tests/choices.

Some of us had a bit of discussion about what other tests/scans/support we were offered when we opted out of an amnio here. This might give you some idea of what you can ask your hospital for, without paying for extra/private scans.

I got 1 in 19 on the basis of nuchal/bloods, decided not to go for an amnio (couldn't bear the idea of miscarrying and knew we wouldn't end the pregnancy), and had my odds stretched to about 1 40 or 50 on the basis on of very reassuring extra scans with an amazing and very experienced fetal medicine consultant, which showed up no soft markers at all.

I'm now 30+5 and we have our third extra scan on Monday. Fingers crossed.

Good luck to you and your OH - for us, making the decision about what to do was the most stressful time.

Bubandbump · 04/01/2011 11:12

We had a 1 in 2 probability from a combination of bloods and nuchal. I had a cvs which in itself was fine but waiting for the results was just torture and extremely stressful afterwards. We were incredibly fortunate as our results were clear but we chose to have the cvs mainly as my hcg levels were crazily high combined with a nuchal of 5mm which in itself can be indicative of other problems. I was one of those people that had to know given our very specific circumstances but it was the worst time of my life and had the nuchal been a lot smaller, it may have changed our decision. From reading your second post you seem to have come to terms with your decision not to have an amnio - I really admire your courage and hope that you can enjoy the rest of your pregnancy.

Original poster

georgiegirl15 · 04/01/2011 11:52

Unfortunately nuchal scans have been done away with so to speak in our authority - apparently women here were getting better care than in the neighbouring authority - what a load of rubbish! Am too late for a nuchal scan - 17 weeks but will check on the postings in the ante natal section as advised. Thank you all so much x Good luck to you spaceal. Let me know.

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itisntreallyme · 04/01/2011 13:58

Hi georgiegirl, I'm in your boat! Also got a call this morning. I'm 1 in 55 though. You seem to have reached a brave decision very quickly so good for you. I hope your pregnancy goes very smoothly. I would make sure you discuss your decision with a midwife though. I just have and think I am going to go for CVS. I was going to wait longer for a 20 week scan to check for soft markers but she explained that if I then chose to abort I would have to deliver the baby as you cannot do a suction abortion after 16 weeks. I cannot imagine ever deciding to abort my baby but I have a very bad feeling about this. Have since I found out I was pregnant. And my age isn't a factor. One of my hormones is very high which is the main concern. Anyway, good luck. Am thinking of you and going through turmoil myself...

itisntreallyme · 04/01/2011 13:59

Sorry just realised you are past 16 weeks already...

Good luck again

Bubandbump · 04/01/2011 14:12

Itisntreallyme, my bhcg was 3.8 mom and I am only 30 so age wasn't a factor for me either. I didn't believe it at the time but there is always hope..

midori1999 · 04/01/2011 14:25

DS3 has Downs, so we are automatically offered an amnio, which I refused. I also refused screening. I was screened with DS3 and we didn't know he had Downs until after he was born.

DS3 isn't any more 'special' than any other child, but he is just as wonderful as his brothers, who both love him dearly. (although we get the usual sibling arguements!) He is almost 7 now and Downs is part of who he is, I wouldn't change him for the world.

Having another child with Downs would be no big deal to me.

Sparklies · 04/01/2011 15:38

I had 1 in 60 from my NHS screening, so I went to the Fetal Medicine Centre in London (highly recommended - top doctors) who did my bloodwork again and did a very detailed scan. Despite the fact my scan came back clear, whatever method they use for calculating the odds left me with 1 in 34

We opted against invasive testing too. I had a detailed scan at 19 weeks and no soft markers were found, reducing my risk to 1 in 70 which I am happy with.

I'm 22 weeks now, and I am hopefully getting an amnio at 30 weeks for peace of mind.. outside the risk zone pretty much especially if done in the right hands.

We would not terminate for T21 either so aside from my own personal fretting, having a 97% chance of everything being okay did not feel like a good enough reason to risk the pregnancy. Took a few weeks to decide that for sure though! If my odds were worse or we spotted soft markers we might have done differently. It's a hugely personal decision and down to very individual circumstances.

itisntreallyme · 04/01/2011 17:25

Thanks bubandbump. My bhcg is 4.74. Although the nuchal is 2.4 which I was told isn't cause for concern alone. I think like you I just have to know. I've already spent long enough worrying about this pregnancy. I just need to know for certain. I think. I think I'm more worried about miscarriage than getting a downs result though so I do wonder if I'm doing the right thing...

Original poster

georgiegirl15 · 04/01/2011 19:00

I lost my first precious baby at 7 weeks - no reasons just miscarried, I am scared about the risk of losing this baby if I had the test. The doctor and midwife were great - they said whatever I decided they would support me - they also asked that if the amnio came back positive would we do anything about it and our answer was immediately no - they said then why put yourself through the discomfort and the worry. Think I am at peace with this now and would not want to lose this baby under any circumstances or for any risk of DS. My hubby also thinks the same and - I'm quite shocked at this - my in laws have also been quite supportive as has my mum. I'm very lucky to have people like this around me! Thank you all for your help and support! I have my 20 week scan in 3 weeks and hope to know a bit more about it then.

OP posts:

Original poster

georgiegirl15 · 04/01/2011 19:01

Good luck itisntreallyme let us know how you get on! Sending out lots of positive vibes to you and LO.

OP posts:

MrsHelsBels74 · 14/03/2012 19:42

I know how you feel, I had my scan yesterday & NT was 1.8 which I was told was very good. So I was stunned today when the midwife called to say that my risk was 1 in 71. I have to discuss options with the antenatal clinic tomorrow but I'm just totally unsure what to do. I'm worried about the risk of miscarriage as I had a miscarriage last year but don't know if I could go through the next 6 months wondering if the baby has Down's or not. Just hope I get a few more answers tomorrow. I'm 37 so know my age has something to do with it.

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