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Pregnancy

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

HELP!! I'm paralysed with indecision about ante-natal testing.

127 replies

rubyone · 17/11/2004 17:41

Hi,
Can you help me? I just can't make a decision about ante-natal testing. When I had my son, I had the integrated test at the Wolfson Clinic (Nuchal plus blood test at 12 weeks and this then combined with blood tests at 16 weeks to give risk). This went fine and a I had a healthy boy.

This time round (after miscarriages) I've arranged the same (I'm 39) but I just can't face the stress of it all.

It would really help me to hear from people who:

a) went and had a nuchal etc and felt that they would terminate if they found anything was wrong. I'd like to know from them, what was it about having a child with Down syndrome that they feared?

b) had a nuchal etc. but knew they wouldn't progress to CVS/amnio or termination but just did it for reassuarance - did they get reassurance and if not, did they then feel the pressure of the cascade of intervention once they knew something might be wrong? ie, is it really feasible to have a nuchal and leave it at that if it's 'bad' news.

c) decided to have absolutely no tests whatsoever. I've heard of a few on the SN board who had a DS child and were glad they didn't know beforehand. I have a feeling that knowing something was wrong at even 20 weeks makes the rest of the pregnancy hellish with worry. Am I right? But is is responsible to have absolutely no tests at all? And didn't you just worry all your pregnancy that something might just be wrong?

d) There are many positive stories of DS children - but there must be some downsides? Can you tell me what these are? Is it a lot harder than bringing up a non- DS child?

I know that's a lot - but it's a moral minefield!!

Any advice would be very much appreciated. THANKS!

OP posts:
bundle · 17/11/2004 17:44

rubyone, have you seen myfairlady's thread?

jabberwocky · 17/11/2004 17:45

This is such a difficult decision. I truly feel for you. I got pregnant with ds at 37. My dh was 55. We had an amnio as we had discussed beforehand that we really wanted to know about any problems ahead of time. The problem with the amnio, for me, is that it is done so late. If something truly terrible had shown up and we had had to make a decision about termination I think being so far along would have just compounded the sorrow of it all. If I got pregnant again, I would go for CVS. Just my opinion on the matter.

rubyone · 17/11/2004 18:05

Thanks for that - yes, I read the MFL thread - which brought up some interesting points. I'm very scared of miscarrying through CVS/amnio. This happened to a friend of mine last year and I saw what it did to her - and the baby turned out to have been fine. She lost it at 20 weeks. Terrible.

OP posts:
bundle · 17/11/2004 18:06

a friend of mine did that too, rubyone, but it didn't stop me having amnios both times. and i went on to have perfectly healthy babies.

jabberwocky · 17/11/2004 18:09

I was told to be very careful in choosing a surgeon to do my testing. Ask about that particular practitioner's percentage of miscarriages and compare to what is determined to be normal.

Tallbird · 17/11/2004 18:10

rubyone, I guess I fall into category a) in your post.
The nuchal is offered as standard on the NHS at 12 weeks around here - so I guess I went for it without a great deal of thought - but I think that if it hadn't been offered, I would probably want to have gone for one privately. In my case, to cut a long story short, I went through that ; results weren't too good (1 in 11 risk) ; went for CVS (I have also been through a miscarriage, so was a bit stressed out by this, but felt I needed to know) ; baby diagnosed with Patau's syndrome ; so opted for termination.
I think that the thing people aren't perhaps made so aware of with the nuchal is that it isn't just Downs that it can be an indicator for - there are also all sorts of other far more serious conditions (Edward's, Patau's...) that it can also highlight - I think that they mainly discuss the risk of Downs as this is something that most people have heard of and understand. In fact, something I wasn't made aware of until the CVS is that a high nuchal measurement can also be an indicator of heart conditions etc, and we were recommended that even if the CVS had come back negative, to have a specialist fetal cardiac scan at 20 weeks.
I have to admit that I would always opt for testing, as I would always want to be armed with as many hard facts as possible - but obviously it's a highly personal decision.

bonym · 17/11/2004 18:15

Hi rubyone - it's a really hard decision I know, as we agonised over it. I'm 38 and 5mths pg and we decided to go for the nuchal scan eventually. As it turned out it gave us great peace of mind as my risk was lowered to one in 1032. We hadn't really come to a conclusion as to what we would do if the risk was higher although the feeling was that if it was more than 1/100 we would probably for amnio/CVS (as this is the miscarriage risk). Don't know what we would have done if we'd found out I was carrying a DS baby - dh was more negative than me as he has never known anyone with DS, whereas I have known a handful of people who have it. I think at the end of the day only you and your dh can decide what to do - if you feel that there is no way you could cope with a SN child then it is obviously more important to have the tests. This probably doesn't help much, sorry - hope you get some more practical advice from other mnetters and that you come to a decision you're happy with.

rubyone · 17/11/2004 18:21

Many thanks for that Tallbird - I am very sorry to hear about your traumatic loss. I think I did read about you on the MFL thread.

Both you and Jabberwocky say that you needed to know as many facts beforehand but - if you don't mind me asking, because this is what I'm trying to find out for myself - did you know that you were going to terminate BEFORE any testing was done if your results turned out to be 'bad', or was each decision made after each individual test; ie, have nuchal, get bad result = decision to have CVS, get bad result = decision to terminate, etc?

And - a more sensitive question, I know - if you had made the decision to terminate before you knew any results, was this because you felt you couldn't cope with a disabled child/or it was better that it wasn't born to suffer, or that you were worried about the effect on other children you had or because of your partner's views - or any other reason?

Many thanks in advance.

OP posts:
wordsmith · 17/11/2004 18:27

Hi there Rubyone, I understand exactly how you're feeling. I had an amnio at 37 with my DS1 which fortunately was fine, but the process was traumatic, I had to go twice as the first time the baby was in the wrong position for the needle to be safely inserted and despite my jumping around a bit as instructed, he refused to move. It really made me think, and before the 2nd attempt a week later my DH and I agreed that if the same thing happened again we would leave it and not go for a third attempt, as the baby would be trying to tell us something!! With second pregnancy (age 41), my age-related risk was something like 1:44. I had a nuchal and I didn't know how wound up I was about it until they told me that my risk factor was something like 1:248 (or whatever, the avearge for a 34 yr old) and they wouldn't recommend further screening. I just burst into tears of relief. God knows what I would have done if the result had gone the other way. Probably have had CVS - then what I don't know.

I agree with JW about lateness of amnio. I wish the nuchal had been available with my 1st pg. I suppose one way of looking at it is that even if your nuchal result did come up as greater than your age related result - say 1:30 instead of 1:150 or whatever it is at 39, then there's still an overwhelming probability that your baby will be absolutely fine. Not that that makes it any easier!

At the end of the day I got through the stress of it by being philosophical and trying to be rational. We make decisions based on probability every day but nothing quite as big or important as a baby! BUT the probability remains the same! Chances are everything will be fine. I guess this is just something we older mums have to put up with.

This probably won't help you at all, sorry!

wordsmith · 17/11/2004 18:37

Think you can only make the decision what to do at each stage when you have the result of that particular test, ie after the nuchal, then the CVS or amnio. If you knew beforehand then you may not even take the test, if you see what I mean. (Haven't phrased that very well but...)

I think it's hard to consider a decision based on something you might experience and probably only adds to the anguish if you do.

I think personally the choice I would have made post-nuchal would have been, is the risk of miscarriage from the next procedure greater than the risk of an SN baby? And then perhaps based it on that.

emmatmg · 17/11/2004 18:40

Hi ruby, I think I came into the first category too.

I had a 1/16 nuchal fold result and 1/4 of a heart defect with DS2. I had a CVS the following day and thought that if the reults did come back "bad" I would terminate. If I remember correctly I had to wait for about 4-5 sets of results for differnet parts of each test, including the heart scan I had at another hospital. Fortunatley for us we were the lucky ones and all our results came back clear, Ds2 is now 3.5 yrs old.
I just felt that with a young child already(ds1 was just 2 when Ds2 was born) we just wouldn't cope and that it wouldn't be fair on DS1.

We've since had another baby(14 months ago now so he's not a baby anymore) and I had the nuchal fold test again without hestitation.

I think I've answered your question correctly. I tend to stay in the silly trivial threads mostly so feel a bit out of my depth. I wanted to add my story incase it helps you.

bundle · 17/11/2004 18:44

fwiw, i think you should at least make a holding decision that you're not tied to before each test, as when you get a bad result that's a very difficult time to be thinking what to do for the very first time.

wordsmith · 17/11/2004 18:47

hmmm good point bundle!

bundle · 17/11/2004 18:49

that's what i did anyway. during my 2nd pregnancy i had a higher than average risk of edwards syndrome, a fatal condition, and knew that i would opt for a termination if the amnio was positive for it. and talking about it before the tests with your partner can be illuminating, i hadn't realised how strongly my dh felt about this issue, as it's not something you'd normally discuss.

lou33 · 17/11/2004 18:52

fwiw , and you probably already know this, but testing is only available for a limited amount of syndromes/conditions/disabilities. You could have every test going and still have a sn child. That was the basis of my refusal to have tests, anyway. My first born had hydrocephalus and 2 heart defects, my fourth child has cerebral palsy. None of these were detectable before birth

Thomcat · 17/11/2004 18:56

Hi ruby, I'm one of the lucky women who didn't have any tests and had a healthy daughter with DS.

Firstly I think you are doing the right thing, surrounding yourself with facts etc before making any decisions, and then ask yourself what is there to fear about a child with DS. Only you can answer that one, all I can tell you, from my personal point of view is that there is nothing to fear. Is it harder? Well yeah I guess so, a bit, but each child is different. I don't have it that much harder to a mum who's child turn out to be dyslexic, or...... ends of having fits.....or.....turns into a drug addict, or has OCD, or steals cars and I have it a lot easier than parents whio son or daughter is diagnosed with autism.
You've asked for some downsides, well, seriously hand on my heart as far as I'm concerned there are none. I really do mean that. Since having Lottie in my life, speaking to others whose son or daughter has DS I REALLY don't understand what there is to be scared about. When people tell me about carrying or giving birth to a child with DS I want to congratulate them, not tell them how sorry I am. What's there to be sorry about?????? Really, what is it that freaks people out about a child with DS, I'd like to know.
As I see it people with DS are just like you and me, they just have an extra chromosome, an extra one, not one missing! They take a bit longer to learn some stuff, there are some health issue that might occor, 3 years down the line the only thing Lottie is really behind on is walking, but she'll get there and when she does everyone who knows her will cry with joy. You see the little accomplishments like that are such a cause for celebration because you know your dearly loved child has fought abit harder to get there.
I can't even begin to tell you the joy she brings to peoples lives. She touches everyone, she has fantastic social skills, is very, very pretty, long wavy hair, big eyes, cute as a button, she's cheeky, she's clever, chatty, alert, bright, funny, oh so, so funny. That's Lottie but I could be describing any other child with DS that I've met.
At the end of the day all I can tell you in relation to what you have asked is no I don't find it hard, and if someone invented something to take away the extra chromosome I'd kill them before I let them change a thing about my daughter, there's nothing wrong with her, nothing that needs changing, she's perfect, totally and absolutley perfect and I ooze love for her through every pore in my body and thank god for my daughter, by perfect little Down's syndrome daughter, I'm SO, so lucky to have her.

If you want to ask me more, anything specific, anything at all then I would gladly talk to you, here, email, phone, in person.

albert · 17/11/2004 18:57

I fall into the c category and I was 36 when DS was born. We had to make a lot of decisions quickly about whether or not to do the testing because I was quite late in finding out I was pregnant but for us it really wasn't a problem. I am certainly not anti abortion in anyway but I felt it wasn't right for me and DH and I discussed the possibilities of having a SN child and felt that we would love the child regardless and were in a situation where we could cope. I also felt that the risks involved in CVS/ammnio were too high for me to consider it an option. I sailed through my pregnanacy and can honestly say that I never worried about any thing being wrong. We are blessed with a perfectly normal DS.
I think Bundle has made a very good comment about the holding decision and wish you all the best in whatever decision you finally make.

aloha · 17/11/2004 18:57

I felt like you and only you can make the decision. I had a great nuchal fold result at 41 (as good as it can be I think at my advanced age!) plus the most incredibly detailed scan at 20 weeks. I really thought beforehand that I would do CVS, planned to do it, but found myself unexpectedly terrified by the risk of m/c, esp as I'd had bleeding in my pregnancy which shook me out of my complacency regarding m/c. At the 20 week scan I had one consultant and TWO professors examining every millimetre of my baby including not letting me up until she had uncurled her hands so they could see all her fingers (they can be markers, it's not just to see her lovely hands!). All this has brought the risk down to less than one in 1000....but I could stillbe that one, and, yes, I do think about it quite regularly. There are no easy options IMO, but I didn't make any decisions until I got to each stage. If my nuchal had indicated a high risk then I would have done CVS but then I didn't expect to feel so protective towards my unborn baby so early. I think you have to do what feels right for you - other people's experiences can never be yours. they don't think and feel just like you. Good luck.

Tinker · 17/11/2004 19:00

Hi rubyone. I'm 40 and pregnant and have recently gone through this angst. Did pay for a nuchal and my age related risk went up from 1 in 62 to 1 548. Felt enormous relief (still doesn't mean I'm "safe" as it were) but I hoenstly don't know what I would have down with a "bad" result. I just needed to know. Of course, I still don't know but I've relaxed a lot.

aloha · 17/11/2004 19:01

I worry about autism, muscular dystrophy ....basically everythig I can think of. Not all the time by any means, but I have to admit to feeling panicky at times. Felt the same with ds. I think I'm not good with the unknown! I'm the woman who hates surprises... sorry to be flippant, but it's the truth!

puffball · 17/11/2004 19:05

Om my God, you are me 11 months ago!
I was 36 with no 2 and feeling very paranoid about possible problems. (Despite the fact that I work with children with s/n and firmly believe that each and every one makes a powerful positive contribution to this world and that meaningful choices and opportunities for those with s/n are a powerful indicator of a civilised society.)

Had done a lot of research and went for the OSCAR (combined blood and nuchal fold) which is about 95% accurate.
Got a v good result (something like 1:2500) and felt really happy until a locum obstetrician said to me a few weeks later, whilst looking at my OSCAR results. 'Hmmm 36 eh? Sure you don't want an amnio?' My world just fell about around my ears (my midwife who is fab was in the room with me, told me afterwards that she couldn't believe he had said that) and I spent the next week crying, trawling the internet to check up on everything from my OSCAR bloke's background (Mr Welch, lovely lovely man in BUPA hospital on the Wirral) to who is best at amnios (the greek chap in London-Kings?-apparently) booking amnios, cancelling them, rebooking, bawling on phone to dh (abroad at the time).

It dawned on me eventually that I had allowed the OSCAR to pose more questions than it had answered (ie what if I were the 1 in 2500)so in a way it made matters worse, not helped by the fact that in that week I picked up a magazine and there was an article by someone who was that 1 in 2500.

Yet my rational side was worrying me as I know that there are far worse things to deal with than Downs Syndrome-in fact the vast majority of the many people I know with Downs have good purposeful joyful lives.I knew for example that no test would pick up Autism, something that is often a far more devastating condition.

And yet my other rational side was telling me that a 95% accurate test which gave me such a good result really was very good!

In a heap, phoning to organise yet another amnio the phone was picked up by another midwife who is a friend of mine. She listened to me and said (as a friend, not as an impartial professional)
'What you need is for someone to give you a kick up the arse and say 'Get real won't you?'

Don't know why, but it was as if the sun came out. Suddenly felt very calm and when she pointed out that the risk of harming the baby in the amnio process was greater than the poss. of it having something wrong with it, it all made sense.
She also reminded me that amnio is offered as a standard procedure at a time when the risk from the amnio is the same as the inherent risk from being the age that you are. Sounds obvious now but I hadn't thought of it at the time.
(She also told me of a woman she had seen who had become pregnant for the first time at 43, had an amnio and lost the baby.......)

Anyway, was sufficiently calmed to cancel amnio and take the rest of the pregnancy in my stride, and was able even to deal with another obstetrician (abroad) making exactly the same comment without getting upset.

Ds born in July and as healthy as can be (thank you God,oh thank you God!!!) I don't plan to have more children but often wonder what I would do if I was pregnant again. I think I might go straight for amnio some days (def. answer but risk to baby) then other days go for OSCAR (lovely Mr Welch,baby safe but still element of doubt) then other times I don't know if I would do anything.

It's so hard and noone can decide but you, which is what I realised, but it really helped me to learn of other's thought processes on this matter (which I'd known about MN then!)

The very best to you whatever you decide.

puffball · 17/11/2004 19:12

Just want to say that Thomcat's remarks me me want to jump for joy. Hate to sound naff but what a charming, uplifting post!

Dingle · 17/11/2004 19:35

TC,what a lovely post about Lottie and DS!

I am also the mum of a wonderful little girl who has DS. She has just had her 3rd birthday and is an absolute little wonder! Yes she is hard work,but so is my ds (NT) and 5 years old!
I think the biggest downside to DS is the lack of knowledge about it.For example I feel paranoid that people jump to conclusions about her abilities, rather than take the time to see her for who she is. No- she can't talk much, but anyone who is willing to take a few minutes with her can learn a few signs and have a lovely conversation with her-much to her delight.
There are obviously more checks that need to be carried out on a routine basis, and sometimes I feel that these can take over. To be honest though Iwould rather know that her hearing is OK by having a check up every 6-12 months rather than further down the line have her communication skills suffer as a result.
Sorry for the waffle-I know it probably hasn't helped at all but my life hasn't been the same since having children. Having a child with SN is parenthood with even more emotion, more love, more tears, more laughter.It has made me have a completely different outlook on life and personally I think it is for the better.
Given the option-I wouldn't change a thing about dd and although it was a shock for us when she was born I am glad that I didn't know until the moment I held that beautiful little baby in my arms.

bunny2 · 17/11/2004 19:44

also look at this thread

I had a nuchal fold scan at 12 wks, got a bad result (1:44) and regretted having had the test. I only had the scan done for reassurance but I certainly didnt get that. The hospital assumed I'd opt for a cvs or amnio but I wasnt prepared to risk miscarriage (I've had 2) so I turned them down. The baby is due next week and the scan result has cast a shadow over my entire pregnancy. I wish I hadnt had it done. HTH

Tinker · 17/11/2004 19:50

This thread might be useful as well

I was KIQFTM