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Pregnancy

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

Original poster

counselling after high risk bloods- what do I need to know?

27 replies

evenhope · 28/09/2006 13:10

I had blood tests at 12 wks but the hospital didn't send them for the chromosomal testing. MW took more blood last week (14+) and rang the lab yesterday for the results. It's come back 1/24 which is even higher than it should be for my age (43).

MW says test isn't so accurate because they've tested as 2nd trimester not first, and has tried to reassure me that even these odds are still only 4% possibility of abnormality.

We've got to go to the hospital tomorrow to discuss our options. What should I ask? I've searched all the archive threads and I think I'm even more confused. DH is adamant that he couldn't cope with a baby with Downs. OTOH I have had 2 missed m/c in this last year and am terrified of miscarrying a healthy baby.

MW did suggest detailed scan but "in a few weeks". I don't think I can wait that long if it turns out there is a problem. As it is we've told no-one about the pg but it's starting to show (luckily I'm fat anyway so it's not quite so obvious). I don't want to announce it only to miscarry/ have to terminate.

nuchal measured 1.5mm. They don't check nasal bone locally but scan picture shows it has one.

OP posts:
Seona1973 · 28/09/2006 13:33

I didnt think they did the downs/spina bifida blood tests until you are at least 15/16 weeks. When I found out I was less far on in pregnancy than I thought I had to delay my blood tests as I would have only been 12 weeks pregnant when they were done.

bundle · 28/09/2006 13:36

i had the quadruple bloods around 14 weeks, which I think is the normal time. is your risk for DS or other syndromes?

Original poster
evenhope · 28/09/2006 13:54

Unfortunately because she had to phone for the results there is no breakdown. I've no idea what they tested for. This will be the first question tomorrow.

OP posts:
juuule · 28/09/2006 14:08

At age 40y and 43y I was advised by the hospital not to have the blood test. They told me that after 40 the equation they use to work out risk just isn't workable because age is factored into it and it would never come out favourable. So I had an amnio done both times. I had had m/cs previously and was also terrified of m/c healthy baby. So, as soon as I got home from amnio I took to my bed for the rest of the day and the following day. I don't know if it made any difference but it made me feel better. Both pgs continued to term.
Would also like to mention that my sister had dire results from the blood test during her first pg. She had an amnio that showed no problems and she delivered a healthy girl.
Good luck, Evenhope, wishing you the best.

geordiemacminx · 28/09/2006 15:14

I had 10 week scan today and asked the sonographer about nuchal testing etc.. she said it was far from an exact science, and that last month a woman that had been given a 1/2 chance of having a baby with downs gave birth to a healthy little girl.

DogMum · 28/09/2006 15:33

Hi evenhope. What did they say at the nuchal scan? Were you given any indication of risk? If not, ask at the hospital tomorrow - they should be able to check back. Also, for any test they offer (prob amnio as I think it might be too late for CVS), I'd ask for the miscarriage rate of the person carrying out the test. Ask whether the detailed scan would be any use now (as you could consider getting it done privately - you may also get better odds for an amnio privately or maybe not - always worth asking.) I'd also avoid making decisions there and then, so you have a chance to chew things over and talk to DH without the doctors around.

Finally, all the best. Don't forget, you've been given 23/24 chance of a healthy baby so that's by far the most likely outcome.

thelittlestboho · 28/09/2006 16:19

Evenhope, I was in same position a few weeks ago, although my ratio was borderline, 1/423, (can't remember now)but it put so much worry on me that I decided to go for the anmio, regardless of the risk of m/c. No way could I have relaxed through rest of pregnancy, that's just the way I am. I did a bit of research and wrote down questions that I needed answered. I think the most inportant ones have to be, who is doing the amnio, how much experience do they have and how many of their amnio have resulted in m/c? The procedure in itself is no problem, I actually found it quite relaxing, although the next few days I was worried to death and paranoid about the slightest twinge, HYPO!! Also ask when "the danger period" for m/c ends, I was told that you can catch an infection up to two weeks later, but that's a rarity. Just try to relax about it all and go with the flow, after it's all over you'll appreciate your wee one tenfold.

Wishing you all you wish yourself.

TLB.x

Booboobedoo · 28/09/2006 17:27

Hi eidsvold: we've all posted for you on the March thread

Just wanted to say that 1.5mm nuchal is a really positive sign: they tend to start worrying at more than double that I think. Also if you can see the nasal bone that's also very positive.

magicfarawaytree · 28/09/2006 17:31

No blood test is 100% accurate. I came back 1 in 55 for downs with my nuchal fold scan and although I previously had m/c I opted for the amnio. It was stressful and I was convinced that I would m/c but went on to have a healthy baby girl. the consultant told me that the risks for miscarriage with amnio is actually less than 1 in 100 but they have to put a figure on it. We paid for the fish? test and had downs negative result in 3 days. if you believe that you would truly terminate for downs then amnio might be the only way to go.

Original poster
evenhope · 29/09/2006 13:10

Well I've just been to the hospital. They say the 1:24 is for Downs only. She said I'm low risk (I believe she said "no risk" but that doesn't make sense) for both Edwards and neural tube defects. Ultimately it comes down to my choice as to whether to go for amnio. Logic tells me that the risk of miscarrying is lower than the risk of Downs but I'm still scared. Apparently the consultant who does it is very experienced and does them all the time.

We made an appointment to go in on Monday morning and were assured that we get to speak to the consultant first and can say no right up to the last minute.

Stressful weekend coming up

OP posts:
Greengirlforever · 29/09/2006 13:34

Hi Evenhope - I have just posted on my April thread with a similar dilemma. My phone call from the midwife was only an hour ago. I am 41 and have just had a nuchal (1.4 risk) and combined bloods done. The whole test has returned a risk of 1:33 - similar to yours. DH and I are agreed that we do not want a Downs baby and we are going to speak to the consultant on Monday. We could get a CVS done straight away or opt for the amnio. This thread has been very helpful though - I'm going to phone them back and ask if I'm at risk for Downs only or the other syndromes/defects. Also going to ask what her mc rate is for Amnios/cvs's... Good luck Evenhope - I think we're both going to have an anxious time this weekend..... sending you hugs.

Sunnysideup · 29/09/2006 14:08

Evenhope, I had an amnio due to an increased risk of down's - I was 35 and pg with my ds (first baby). I just couldn't stand the uncertainty, I felt we had to know what we were going to be dealing with; if the baby had downs it didn't mean I would have terminated, but I simply wanted to know.

It's a balance and it's just working out what is 'least worst' for you! The uncertainty and worry of not knowing was worse for me than the low risk of miscarrying; but of course I was 35 not 43.

On the positive side, I really did have complete choice until the last minute and not one bit of pressure was put on me to have the amnio. Ut wasn't painful (just a very odd pulling sensation as the needle came out) and I had a lovely relaxing two days with my feet up afterwards! It was also really really nice to know the sex of the baby, helped me bond and get used to the idea of the baby as a person. DS was not downs btw.

Don't worry too much, have a good weekend!

Greengirlforever · 01/10/2006 20:00

Evenhope - we are speaking to our consultant on Monday morning and will probably be going straight in for CVS. Keep in touch girl and I'll be keeping my fingers crossed for both of us.

thelittlestboho · 01/10/2006 21:32

Yeah, good luck to both of you.

tlb.x

Original poster
evenhope · 02/10/2006 11:10

Just back from the hospital. I hadn't made a decision even when we got there. There was no pressure though and she said if I was really unsure I could rebook for next week. She did a fairly detailed scan which appeared to show no soft markers for Downs but obviously not definitive.

I decided to go ahead with the amnio- then wished I hadn't when it hurt ! Feel all wobbly now and hoping I made the right decision.

GGF how are you?

OP posts:
thelittlestboho · 02/10/2006 13:00

Feet up for a couple of days Lady and then take it really easy for next couple of weeks. Did hospital say when you'll get results back? Up here in Ayrshire, it takes 3 days, althought due to the weekend we had to wait 6!! Stress stress, to say the least. Hope everyhting turns out ok, sure it will.

tlb.x

Greengirlforever · 02/10/2006 20:58

Hi Evenhope and everyone. We went straight for the CVS as planned but although my (our) mind is calm and made up about what needs to be done it was still incredibly hard. Especially seeing the little mite go crazy on the scan.... At first I only wanted to know the sex if the news was good if you see what I mean, but when it came to it I thought how could I let this little being go without even acknowledging whether it was a boy or a girl? Getting quite emotional again even typing this... We will hear by the end of Wednesday or Thursday - I am hoping so hard. Have tomorrow off work and probably Wednesday too but I'll see how I go.

Evenhope - I gather amnio preliminary results are now just as quick as CVS so will you get yours at the same time? More days of hell to go through - best of luck and everything to you. I'll definitely post again tomorrow, just for something to do....

Original poster
evenhope · 03/10/2006 08:43

GGF I spent yesterday watching DVDs and I plan to do the same today. They said they would ring today or tomorrow. Don't know about you but I hardly slept last night. I had all sorts of aches and pains and kept having to go to the loo to check. TBH I think this has been more stressful than my original plan of just leaving it to see what happens. Everyone (including DH) said "you'll be able to relax for the rest of the pregnancy" but I realised during the night that I hadn't actually been worried- I just am now. I wish I'd gone with my gut instinct not to have it done because I'm more wound up now than I've been for weeks.

Didn't help that having not felt it move before it was really really active all evening and it just made me wonder whether it was in difficulty. Why do we put ourselves through this?

(MW didn't agree and thought it was "much better" to know. She didn't approve of my "wait and see" policy at all

OP posts:
thelittlestboho · 03/10/2006 12:28

EH, I did/felt everything that you've written, it's obviously the way of things in the aftermath! I was convinced I was leaking fluid,and kept checking too! Suffice to say I wasn't. Then I started experiencing groin pains, which got me so concerned I phoned midwives, so out of character for me to be an alarmist, and was told in was ligament pain, which indeed it was. Just know that it perfectly natural for you to fret, and even more so for you to regret your decision to take the test, but trust me knowledge is power.

Now get some magazines and cakes in and indulge yourself, lol

Katrina.x

Greengirlforever · 03/10/2006 14:46

Evenhope - snap with the twinges, paranoia and sleeplessness. I know I don't I regret doing all of this, because I was always going to at least have the nuchal at my age - although if that had been low risk I wouldn't have gone any further - but 1/33 being a considerably a higher risk than the 1-2% of mc if you did the test (god, it's all so mathematical) kind of made that decision as "easy" as it was going to get.

But now in my sleepless state I'm going what is the very worst thing that could happen and that of course is the test coming back ok and me having a mc because of the test! . Is it any wonder we can't sleep and are stressed out of our brains????!!!

How and ever. As suggested by the wonderful littlest boho I too am indulging myself today (and tomorrow and possibly Thursday.....) by hanging out at home. I have just had a lie in the sunshine so my little bean could feel some sun and have had something called "Chocolate Chaos" or some such from M&S to eat.

Original poster
evenhope · 04/10/2006 16:49

Preliminary results back and no Downs!!

OP posts:
dreamingoflamu · 04/10/2006 17:47

wonderful news. I wish I had seen this thread last week. We've been going through the same thing at the same time. I've got a thread going on the pregnancy board too. So glad it all worked out well for you and enjoy the rest of your pregnancy.

Greengirlforever · 04/10/2006 18:24

Snap again! Preliminary results back and no Downs!! Hooray for us!

TarkaTheHeadlessOtter · 04/10/2006 18:26

glad its good news for you both - did you find out what you are having?

Greengirlforever · 04/10/2006 19:46

Tarka - I thought I would but it appears that that doesn't happen until you get the 2+ week "full" result.