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

Anyone had Chorionic Villus Sampling after high risk of Down's at 12 week scan?

100 replies

LittleMy34 · 03/12/2007 20:48

We have just booked to have a CVS test after being given a 1:24 risk of Down's Syndrome and 1:71 of Edward's/Patau's Syndromes. Our nuchal fold measurement was 4.8mm, which is apparently pretty high.

Anyone had similar results and decided to have CVS or Amnio? Anyone decided not to have the tests? How did it turn out?

Apparently the baby might also have a congenital heart defect, based on these results - yikes.

Any thoughts gratefully received.

OP posts:
yurt1 · 07/12/2007 22:03

I always hope they are useful LittleMint (I never intend to say "you must do the same as me...') but its such an emotive issue its hard to not cause offense to someone if you state your views/ reasons iyswim.

Because I know more than the average about antenatal testing I actually have great issues with it (in that I think people undergoing it should have the opportuinity for proper counselling- because actually it is a huge decision either way, and how can you ask the questions when you don't even know what they are). It took me about 3 or 4 years to understand and come to terms with ds1's disability- the thought of doing it in a a few days would horrify me! Hideous and too much to ask - and with no help at all. These days I tend more towards my friend who visited in the summer (having not seen her or her kids for 5 years- our children saw each other every week until they were almost 3) She said "it makes life interesting'. I found that a really helpful way try to live - it's true, but doesn't diminish the difficulties. Which ime can certainly be considerable. I am glad I was never in your situation and never had to make a choice iyswim.

I really hope you get your answers soon. If you do get a confused answer (which can sometimes happen after CVS or amnio, it's not always 100% weirdly) there are people on mnet who can explain what it means even if they can't make any decision/give a definitive answer.

needmorecoffee · 08/12/2007 19:36

I'm still thinking about 'would you knowingly bring a disabled child into the world.'
Well, yes I would. Having a disability doesn't make a child less perfect or inferior or more of a problem. Why would it.
All of us and all our current 'healthy' children, to be blunt, are but one accident or disease away from disability. You wouldn't cull them then so why before birth?
Of course we all wish for good health for oursleves and our children but if it doesn't happen, well, thats life.
I'm sorry if I upset anyone and I am pro-choice but why is it that disability is seen as grounds for a termination and not, say, ginger hair? Why are we as a society disablist? I'm disabled myself, as is dd (she has severe cerebral palsy, it happnened at birth). I think most people have a fear of disabled people because they never mix with disabled people. Its a fear of the un-known, the not-perfect. Without that full integration its not possible to make a proper choice. We have been taught to abhor and fear disabilty.
I am sorry if this upsets anyone but what is so bad about disability.

NorthernLurkerwithastarontop · 08/12/2007 20:14

needmorecoffee - i think you are absolutely right there.

LittleMintSpy34 · 08/12/2007 20:26

needmorecoffee - I do think you're right, and that there is a lot of fear of disability brought about by lack of experience, knowledge and information, but I would also add to your question about why not ginger hair, this one:

why is it more acceptable for a teenage girl to have a termination because she doesn't feel she is able to care for a baby at her age, whether NT or not, than for someone else to have a termination because they don't feel they could care for a baby which has special needs?

I think for me it still comes down to individual circumstances - the teenage girl and the mother of the child with special needs may both be equally capable, if it came to it, of caring for and loving their child, but for me they have an equal right to make the choice not to do so.

However, and this is where we agree, I think, it is vital that this is an informed choice, and that is where the lack of information about disability comes in. It is much easier to draw an informed conclusion about whether one could care for an NT baby as one is likely to have encountered lots of them, whereas the unknown is always more scary.

so here's a question for all of you who have children with special needs (apologies if that isn't the correct terminology, happy to be corrected) - when you found out your child had these needs, what was your first reaction? did you know straight away that it made no difference, or did it take you a while to get into that mindset?

I'm asking for the same reasons as my OP, in that I've been through a number of reactions since our test results, and am interested to know if these are shared.

Thanks for any of you that wish to post a reply!

yurt1 · 08/12/2007 20:40

NO the terminology is fine

Our was gradual. I first began to suspect a problem when ds1 was 17 months. He wasn't diagnosed until almost 3. When he was first diagnosed we thought he was likely to be mild and on the whole caught up by 5. Now he's 8 it's clear that he's very severely disabled (he's severely autistic, has no speech- is I think unlikely to develop any although he certainly understands a lot now). He is likely to need 24 hour 1:1 care for the rest of his life. There was never any issue about the results not making a difference as I was well and truly in love with him by the time we started on the road. Of course there was a period of grief (which in some ways I think you always stay in), but would I rather he hadn't been born? Absolutely not.

I have 2 other children and they are all loved equally. I think that's something that people without a disabled child don't realise (I didn't). The love you feel for a disabled child is exactly the same as the love you feel for non-disabled children (except maybe sometimes more protective- the way you love a newborn baby). So for me with the third pregnancy in particular (where we knew the issues were more severe than we had initially thought), there was no way I would have been able to terminate a 12 week or 20 week foetus for disability that was compatiible with life, had something been picked up, because for me that foetus would have been loved as equally as a non-disabled one.

I'm not in any way anything other than pro-choice btw. I could imagine having a termination (especially when younger) for the inconvenience of being pregnant at the wrong time (I'm not sure I could have every gone through with it but perhaps) but for disability I just couldn't do it.

Being honest about how I feel about our situation doesn't mean that I judge others or expect others to do the same though. What I do think is there can be pressure put on people to terminate and I don't think that everyone who terminates for disability has always made the correct choice for them. I have a friend who had an operating theatre booked twice for a termination for DS, despite her repeatedly telling everyone involved she had no intention of having a termination. That's a lot of pressure- there are times in my life when I can imagine I would have found that hard to withstand (especially when I was young).

eidsvold · 08/12/2007 23:50

This will be long:

to answer your question - this is my story and my beliefs - my dh and I are two of 'those' people who knowingly brought a child with special needs into the world.

We were originally told that our dd1 had a very severe heart defect at 20 week scan - one which would require multiple surgeries before the age of one and if she survived to be a teenager - a transplant.

We were then sent to the Harris Birthright Trust at Kings for fetal cardiac scans. It turned out our dd1 had a different heart defect - serious but operable with a more positive outcome.

We had decided prior to the cardiac scans at Kings that this was our babe and she would be born - as I said earlier - who is to judge the worth of a life.

We were told exactly what the heart defect was and told that it usually always is found with down syndrome - very rarely is a child with this type of heart defect born without down syndrome.

Again - I think after being worried and saddened to learn that our babe would have a heart defect - the ds seemed to be okay. IN fact when the fetal cardiologist explained it to us - we were very reassured. He was quite puzzled - he did say that we were very calm compared to most people he sees. he then read my notes more carefully and saw that original suggestion and said he understood why we were calm.

As I said before - we know three families who have members with down syndrome - one fella is the same age as me, the other is 21, the third is a teenager now. Whilst there can be tough days - as there can be with any children - we did not see down syndrome as something to be afraid of.

How did we react when we first got the news - at the 20 week scan when they told us about the possibility that dd1 would have a hypoplastic left heart - stunned, worried. We went home and read everything we could get our hands on about it. We were worried for our child - would she survive, would she be okay.

WHen we were given the news about the down syndrome - yes I did cry - again - what worried me - would I be up to the task of being the best mother dd1 could have, and I cried for all the imagined hurts and slights I saw in her future. I cried for all the prejudice she will face. I cried thinking of how this little one would survive the cardiac surgery that she would face.

Do I wish she had never been born - hell no.

Is she adored and loved as much as our other daughters - yes.

Five years down the track - I can honestly say that all those worries I had - well most of them have gone. She is a fighter and came through the cardiac surgery well - she is a healthy, happy, adorable little girl. She attends a mainstream kindergarten as well as a special needs unit. She is a very sociable little girl - she is doing most things a 5 yo can do - we are working on toilet training but I know she will not be in nappies when she is 18 - she will be able to hold a job, have a life of quality and of independence. In January she is off to mainstream school to start her formal schooling.

You know the hardest things I have had to deal with in raising my daughter - other than her cardiac surgery - other people's ignorance and attitudes. Society's view that my child is somehow worth less than another.

NorthernLurkerwithastarontop · 09/12/2007 00:00

Eidsvold - I love reading your posts - so eloquent, so inspiring.

eidsvold · 09/12/2007 00:02

littlemint each persons reacts differently - we all have different life experiences that have shaped up to be the unique people that we are.

You will go through a range of emotions - from anger, to blame, to grief, to sadness and despair and so on. Whatever you are feeling at the time is the 'right' thing - there is no right or wrong feelings.

needmorecoffee · 09/12/2007 09:30

Littlemint, good post and thankyou for asking. My reaction on being told dd was brain damaged was tinged by the doctors to be honest. They said she wasn't going to live and if she did she would be a vegetable. I was very upset. I didn't want her to die, not my baby, but I was very afraid of the 'vegetable' outlook. I had no idea about disability (older son has Aspergers but walks n talks). My only images came from the odd glimpse of women with an over-sized pushchair. I didn't know any disabled people (except me with MS). The midwives were equally negative.
There were no positives at all until one of the cleaning ladies sat with me on day 4 (I was in 9 days and dd 4 weeks) and let me cry and reminded me that whatever fancy words the doctors used, dd was still a baby and needed whatever any other baby needed. That was the first time anyone had reminded me dd was a baby and not a problem likely to die. I knew then that I desperately wanted her to live but yes, I was scared. Everyone was negative, the terms they used were outdated.
Yes, it is pretty awful finding out your child has brain damage or is going to be 'different'. We all hope for what we imagin is a 'normal, easy' child but man, do those doctors need some disability training. They told me I should let her die. And since dd's birth there have been several articles on the news of parents fighting against doctors to keep their babies alive. Pretty much tells you all you need to know about how doctors feel about disabled babies.
I wouldn't give up one minute of the last 3 and half years with dd (and she only has a 50% chance of making it to 10). I love her as much as my other 3 kids and she has enriched our lives in the same way as any child. The tears I have shed, and there have been plenty, have been about how she's treated by other people and the difficulties she has faced from treatment/society/people.
Plus, doctors paint the most negative picture. Who uses the term 'deaf blind vegetable' for gawds sake. And they were wrong. She's not deaf, she's not blind and she is as bright as a button. But they wanted me to kill her because of their own pre-conceived notions of what being disabled meant.
She's exactly the same as any other 3 year old except that she can't move (she has severe total body cerebral palsy, cannot roll or sit or use her hands or talk) and in fact, you could say there are silver linings. If I put her down, she doesn't leg it like my other 3 did.
Obviously CP is something that happens at birth or becomes apparent in the first year of life so can't be tested for but if we had known when I was pregnant I would have still had her. And she has taught me to see the human being behind every disability now. A valuable gift.

needmorecoffee · 09/12/2007 09:33

I'd just like to say thnkyou to everyone on the list for letting us show that there is another side to things than the hushed doctors office and the immediate assumption that of corse you'll want to terminate if 'it' isn't perfect. I wish doctors got decent training from and with differently abled people. But they don't. So they only see one side

Peachy · 09/12/2007 12:11

My kids were picked up with Sn later on (ds3 regressed at 3) so the decision wasn't one: thats simply who they are.

'why is it more acceptable for a teenage girl to have a termination because she doesn't feel she is able to care for a baby at her age, whether NT or not, than for someone else to have a termination because they don't feel they could care for a baby which has special needs? '

I guess for me (and only me), i think that if you choose to have a baby then you are accepting that baby whoever they may be. Whereas a teenager who gets pregnant is unlikley to have amde a considered, rational choice to do so.

But we are none the same and all our circumstances vary. I ama ware that whilst ds3 entriches my life hugely, he and ds1 do have a negative effect on ds2's in many ways, and that he struggles at times.

Peachy · 09/12/2007 12:16

Oh the effects of finding out- sorry- I was very severely depressed for a while, then when I heard at the end of that time that ds3 also had issues (probably evident beforehand but I coudn't see it, was too low) I plummeted again. I'm on the up now, with days where I get so low because of incidents like bullying- but DH still has very severe depression which is curently being medicated but ahs almost cost him his life in the apst, so very hard indeed.

LittleMintSpy34 · 10/12/2007 09:12

Good point Peachy, about choosing to get pregnant, and one I hadn't taken into consideration.

And thank you all for posting your experiences - am at work so can't do a long post, but I can't tell you how useful it is to hear all the emotions you have been through. I think sometimes it's easy to feel that everyone else is being a hero and takes the news on the chin with a smile, and that therefore by being scared/angry/depressed means that I couldn't possibly manage it - so it's good to hear that you all had these emotions too!

We may hear the test results today, am crossing my fingers that we won't have to make any of these decisions, but you have all helped immensely to get me to this point!

Thank You

Peachy · 10/12/2007 10:01

I hope you get the news you want. Don't let anyone push you into a decision before you are ready- I think thats the most importanta dvice you can get.

yurt1 · 10/12/2007 10:16

Good luck for the test results- will be keeping fingers crossed for you.

I had a lot of anger (in the main) about ds1's diagnosis. Although i was angry with the rest of the world rather than him Recently things have changed a bit. DS3 is almost 3 now so off my hands a lot more and I've started working pretty much full time again doing something I love (research into autism!) I realised (quite recently I think) that you have one shot at life and there's no point wasting it being angry.

A long lost friend visiting in the summer helped enormously as well. Ds1 was overjoyed to see them (last saw them when he was 3), it was a great evening and as he was hopping and spinning round the place my friend said 'well your life will always be interesting' and I thought about it and realised she was right. A lot of people really, really like ds1 (there are others who can't handle his oddness at all) to the point that it surprises me. Things are hard at times, but he's taught me so much. He's totally changed my perspective on life and now I try to make sure we do stuff together that we both enjoy. We both love Dartmoor and he allows me to drag him up there probably far more than an NT 8 year old would (ds2 refuses to go- he says its cold and wet ). And really, he's utterly, utterly barking - he has no social conventions at all and makes me laugh.

Louandben · 10/12/2007 19:43

Hey Littlemint34 - have been thinking of you today. Did you get the results yet? Hope you get good news.

mrslurkalot · 10/12/2007 22:28

Hi Littlemint, you have also been in my thoughts today, the waiting is awful I hope you have your results by now. x

LittleMintSpy34 · 11/12/2007 10:17

Thank you for all your thoughts - no results yet, I called them yesterday and they weren't back yet, but should be in today.

So I am slowly going mental while trying to concentrate on work......it's not working very well.

will let you know as soon as I hear - thank you so much again for thinking of us!

My x

LittleMintSpy34 · 11/12/2007 16:05

So the preliminary results just came in (I had to phone them, of course!) and they have excluded Down's Syndrome, Edward's and Patau's Syndrome. We have to wait for final final final results, but the preliminary ones are almost always accurate, apparently.

Phew!

We still have to have the specialist heart scan, but apparently if that is normal and our 20 week scan is normal, we should have the same chance of a NT baby as any other couple our age.

Thanks again for all your help and support on this thread - it wasn't just brilliant, but also a real eye opener about disability, so thank you all.

jeanjeannie · 11/12/2007 18:34

LittleMintspy34...that's brilliant news! So looks like you're in the same position as us - waiting for the 2 scans....fingers crossed again.

So pleased for you and your family. Jx

Louandben · 11/12/2007 20:02

That is great news Littlemint, so pleased and relieved for you. Hopefully I will be in the same position next week, after our test tomorrow. Have a lovely Christmas. x

mymatemax · 11/12/2007 21:33

Littlemintspy

So pleased for you & fingers crossed that the final results are positive.

I have been reading your posts & admire the way you have posted throughout what has been a very difficult time.
Our ds2 is disabled & as the others have said (far more eloquently than i ever could) loved equally & now I live in the sn world I would never choose to terminate because of sn.

But I am pleased & feel a sense of relief for you, ultimately what every parent wants is healthy happy children, good luck with your pregnancy.

mrslurkalot · 11/12/2007 23:08

Hi Littlemint,

I am so pleased for you - the relief is tangible isn't it?
I was told that if the preliminary results came back OK the chances of something else coming up on the full results was tiny.
I hope that you can now relax and enjoy your pregnancy.
Have a wonderful, Happy Christmas. xx

mrslurkalot · 11/12/2007 23:09

Louandben, My very best wishes for your test tomorrow.............x

LittleMintSpy34 · 12/12/2007 11:06

Thanks mrslurkalot - I did find myself getting all worried about the final results this morning, so that's good to hear. The midwife on the phone said 'You should be very reassured by these results' so I'm trying to feel reassured, but it's as if I need something to worry about! Time to relax and enjoy, as you say.

Thanks also jeanjeannie and louandben and mymatemax for your kind thoughts and wishes - I can't tell you what a support you have all been.

Good luck with your tests louandben and also for the scans jeanjeannie!

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