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Pregnancy

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

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Original poster

Nuchal Scan

64 replies

expatinscotland · 19/04/2008 22:33

Should I not have bothered if we have no intention of having an amnio and/or terminating a pregnancy of a child with Down's Syndrome?

I thought it was for assessing risks of other conditions, too, which are incompatible with life?

Before the sonographer started, she laid into me with questions about it and would I have amnio if it came back as high risk of Down's - didn't mention Edward's or other conditions and blah blah blah.

So I just said we'd think about it if that happened, although inside I was thinking, 'If you think Down's is the worst thing that can happen, you've thankfully never been plagued by the great, big, hairy black dog that's been riding on my back for years, lady!'

I'd like to get an idea of risks, but so we can plan how to work together as a family with our new child.

OP posts:

Original poster

expatinscotland · 19/04/2008 23:35

i have no idea, but i was really shocked.

she's an excellent HV who visits us once a month and has been so helpful and on the ball with getting DD1 assistance and coordinating her care with the ed pysch/headmistress/nursery teacher for when she goes to school.

i had told her i was pregnant and that we'd continue it, having lost our other child.

OP posts:

yurt1 · 19/04/2008 23:36

Well exactly.

Hope you're keeping well expat. Put your feet up!

Original poster

expatinscotland · 19/04/2008 23:39

thanks, i'm off, too!

well, i might nibble some chicken before turning in.

we're just happy wee one is still here with us.

OP posts:

yurt1 · 19/04/2008 23:40

It's fab having three

Original poster

expatinscotland · 19/04/2008 23:42

yeah, you say that now!

OP posts:

yurt1 · 19/04/2008 23:47

It is bloody hard work, but I think I've struggled more than most. Still, something about having a 'crew' that's very rewarding.

Original poster

expatinscotland · 19/04/2008 23:53

oh, yes, DD1 has already been asking if she can hold the baby.

she can.

but i have a feeling DD2 might try to thump it.

OP posts:

yurt1 · 19/04/2008 23:55

ds3 (aged 3) is now the biggest beater up of his siblings.

Original poster

expatinscotland · 19/04/2008 23:58

dd2 is very cheeky. i can see her being a thumper.

poor wee one!

she also has a unique idea of what it means to cuddle something.

the cat bolts out the door whenever she comes in the room.

OP posts:

eidsvold · 20/04/2008 00:31

actually swedes - dh and I went into testing and knew exactly what we would and would not do.

yurt1 · 20/04/2008 08:40

expat- I think it's like a script they get stuck in "DS means x, y, z" when most of them have zero idea/experience anyway. Eidsvold was is with dd2 or dd3 that the genetic counsellor tried to tell you what life was like with a child with DS? (with dd1 in the room). PMSL. Talk about being stuck in a script.

eidsvold · 20/04/2008 09:06

it was with dd3 - only one I had a nuchal translucency screening with. Yes despite dd1 being 4yo and clearly having ds - she tried to tell me what it was like to live with a child with down syndrome.

Original poster

expatinscotland · 20/04/2008 22:06

Seriously, eids? What did you say?!

It would have been hard to keep a straight face.

OP posts:

eidsvold · 21/04/2008 11:16

i let her speak ( given that I had already told her she was wrong when she was banging on about nts only being for detecting your chance of having a child with down syndrome.

I then told her that she was talking about my reality and I did not think there was anything she could tell me that I did not already know.

At this stage dd1 ( who was so knackered it wasn't funny) managed to spill her sultanas all over the floor. I dropped to my knees to pick them up hoping to avoid conversation further. She just talked to my head. Dh arrived from work and so I used that as an opportunity for an escape.

You know what - all I could think of afterwards was - what it must be like for someone very young, having tests as it is presented as a really good idea - am sure they would end up being even more worried about ds when in fact a raised nuchal fold could mean a number of things for them.

eidsvold · 21/04/2008 11:20

expat - it was one of those - oh look - there's daddy. Look girls - there's daddy. Let's go meet him!! ( as I spied him out of the window of the room). Dd2 was about 18 months old if that. So I must have looked a right idiot - waving like a maniac at dh!

NotABanana · 21/04/2008 11:43

When we went for our 20 week scan we were asked why we hadn't had any tests. I said it was because it makes no difference to us and we didn't want anything invasive (esp having had a m/c recently). I said obviously if the baby has 2 heads or something wrong we would want to know. I knew immediately from his face there was something wrong and he told us the baby had markers for Edward's Syndrome and we were booked for a further scan. I agreed to scans but not to an amnio.

Each person has to make their own choice when presented with the info but we were having the baby regardless so wouldn't have wanted to risk losing him, special needs or not, by having an amnio.

Flibbertyjibbet · 21/04/2008 12:16

I had private nuchal scans with both my boys but then I was 42 and 43 when they were born - the nuchal and the blood tests that go with is the only way to get a risk of downs or other syndromes that does not take the mothers age into the equation.

I absolutely did not want an amnio because of the risk of miscarriage. I was sure that I would not abort a downs baby, but you never know what you will do unless you are actually in that situation, so decided that a nuchal would give us an earlier indication. Otherwise if you are 20+ weeks when you get an amnio result, you might jump into a wrong decision. Also the thought of a late termination fills me with absolute horror just from the physical side of things.

I thought that if I had a nuchal/blood tests and something DID show up then it would give us time to get ready for our baby instead of having a shock when they were born.

I agree with expat that there are things I consider much worse than Downs which don't show up until the baby is born or much later.

My age related risk was 2/100 at 42 and 10/100 at 43. The consultant said the hospital blood test takes into account maternal age and only shows up markers so is not at all accurate for risk imo.

My nuchal/blood tests came back 1/15000 with ds1 and 1/7500 with ds2. So much better for older mums I think to have nuchal.

Martha200 · 21/04/2008 14:24

We didn't have the nuchal test which was met to the horror of my consultant! (she thought as it was on offer I should take it!!)

Both DH and I were of the attitude what will be will be (yes, had the 12 wk and 20wk scan)
but that was enough for us.

I am a believer that there are never any guarantees ever to lives, there could have been something else that can't be tested for, or something may develop or happen as our children age but we as parents were not prepared to take that test.

It used to grate actually that people always seemed so keen to ask what sex do you want and harp on about the sex of a child, whereas all we hoped for was the health and happiness, though still not prepared to do that test.

fortyplus · 21/04/2008 14:43

I had one way back in 1994 with ds2 when it was a trial project at the Harris Birthright Trust.

The guy doing the scan 'guessed' that the baby was a boy.

I think what I was hoping for was a 'good' result that would enable me to feel happy about my pregnancy. If the result had shown abnormalities I would have taken advice about further tests.

constancereader · 21/04/2008 15:06

I had a nuchal scan to avoid having an amnio.
My history is that I had a baby with Trisomy 13 (Patau's syndrome) for which I didn't have a Nuchal. This was picked up at the 20week scan. It is a terminal condition. We opted for a termination.

My risk of having another baby with a chromosomal problem is high. I too find it very odd when people only discuss Downs Syndrome as Trisomy 13 and 17 are the next most common conditions.

I couldn't take the risk of losing this precious pregnancy, but if the results had come back high from the Nuchal I guess I would have had an invasive procedure.

I tend to get irrationally defensive when people talk about not testing as they would have the baby no matter what - I think it makes me feel guilty. I also think they are not actually thinking about the other things that can go wrong.

minster · 21/04/2008 15:16

constancereader, I'm sorry you've been in that terrible position. We had a baby with T18, also fatal. Our baby died before the 20 week scan but had she survived we'd have be left with the horrific decision to terminate a much wanted pregnancy in the late stages of pregnancy or to birth a baby that would inevitably die shortly after birth (if it made it that far).

T18 is one of many conditions nuchal fold measurement screens for. It has nothing to do with wanting a perfect baby as I've seen people insinuate.

constancereader · 21/04/2008 15:23

Thanks minster - I am sorry I should have said Trisomy 18 not 17.

You put it much more clearly than I did. It is about having a baby in the first place, not having a perfect baby.

I feel grateful that the 20 week scan discovered my ds's condition. Like you, the thought that I would go into labour at term only for my baby to die was unbearable. This is why I feel nuchal screening should be available to all. Not to mention 20week scans, as shockingly these are not standard.

Ceelo · 21/04/2008 20:14

I live I the USA s my experience I probably different but my AFP screen test came back 1/28 positive for Downs syndrome and the only way to positively rule out problems is amnio. Next time I am just going to have the amnio. For those of you who say it would not affect your decision perhaps you don't know what it is like to be confronted the prospect of having a child with a genetic disease. I know that even the possibility of a positive test altered my attitude.

snorris · 21/04/2008 20:23

Ceelo-an amnio may test for a genetic disease but there are many other things that will not show up. My youngest daughter has a congenital heart condition that was undiagnosed antenatally and even with an amnio it would not have been picked up. (I checked with the doctors after her diagnosis-she's also had genetic testing to rule out anything else).

snorris · 21/04/2008 20:26

Should have added that even with our experience there would have to be an incredibly strong reason to have an amnio this time.

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