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1:10 risk of Down's - last pregnancy ended in stillbirth

(17 Posts)
TooImmature2BDumbledore Mon 03-Oct-11 20:45:53

Hi people,

I seem to have spent the last 6 months finding my way to new sections of MN I didn't know existed before. This afternoon I picked up a voicemail asking me to call the hospital re Down's Syndrome test (nuchal scan and blood test), and when, an hour and a half later, I got hold of someone who could tell me what that meant, they told me I had a 1:10 risk of D.S. I was told the next step would be to discuss amniocentesis. I have to phone back tomorrow when the fetal medicine midwives will be there and discuss it with them.

I'm 14+4, the test was carried out at 13+5, the nuchal fold was 2.2, but I don't know what, if anything, showed up in the blood test. They didn't say anything about nasal bones or anything else during the scan. I'm nearly 28.

I'm so scared. My first baby was stillborn at 41+3 in March, and I am so scared that something is going to go wrong this time too. I don't know what I'll do if the amnio comes back positive. I really hope I never have to make that decision. DD didn't have Down's and they didn't find a reason for her death or anything wrong with me. I didn't have the nuchal test with her because it wasn't offered then, and her risk factor was 1:750.

What should I be asking tomorrow?

RockyRoads Mon 03-Oct-11 21:05:15

I'm so sorry that you're having to go through this after your trauma. I don't have any experience of Amnio, but I did have a CVS about 7 weeks ago, which is very similar (placenta extraction, rather than amniotic fluid). My risk was 1 in 3 for downs and it came back clear, so all is not lost. I would ask about the consultant who will be performing the procedure's risk stats and which stat has caused your high risk factor. I'm afraid I'm no expert on the bloods side of things, but I know other ladies out there are, but I wish you all the luck in the world

TooImmature2BDumbledore Tue 04-Oct-11 11:46:51

Thanks Rocky. I have spoken to the midwife this morning and she wasn't really very helpful. She was very patronising and wouldn't tell me what my actual results were, or the risk stats of the consultants individually. She said that as a team they had a risk factor of 1:150 but she wouldn't tell me which individual was best. I could have a CVS now, or an amnio at 16 weeks. That's only a week and 3 days away, so I think I'll hold out for that. I'm waiting for my consultant to phone me back now. She doesn't carry out the procedure herself, though...why not? She's an obstetric consultant!

stripeycow Tue 04-Oct-11 11:50:48

Hi Dumbledore, have you spoken with the hospital yet? I had a terrible nuchal scan in my last pregnancy. Sadly my baby did have Down's Syndrome and widespread hydrops. I chose to terminate in light of the significant risk of late miscarriage / stillbirth. However, it was very obvious from the scan that there was a problem. Your nuchal measurement is fine, so the blood must have been wonky. Please do remember that the overwhelming likelihood is that everything will be OK.

I had a CVS rather than an amnio (it can be done sooner) - the amnio is considered to carry a lower risk of miscarriage, but consultants who do a lot of CVS procedures will usually give a 1/100 or better risk. Many people recommend the Fetal Medical Centre in London for a more thorough scan (they will look for soft markers such as a nasal bone, heart problems) and this maybe something to investigate if you are uncertain about further testing and can afford it.

Many people say (when they have not been in the situation) - why have the testing that carries a risk of miscarriage unless you know you will terminate. Our experience was that we needed to know. We had to take it one stage at a time and did not talk much about what we would do until we got the results.

I have been luring on the brooking thread a lot. I am pregnant again (18 months on) and had my NT scan yesterday. Nuchal fold was 2; nasal bone present (wasn't last time). I am now waiting on bloods.

I am keeping everything crossed for us both. Do keep posting here - I know more people will be along to support you as you decide what to do. It seems so unfair that someone who has already had such a tough time is in the position. I am very sorry for the loss of your first baby. Hang in there and look after yourself. Do whatever you need to do to get through xx

ghislaine Tue 04-Oct-11 12:25:49

Hi Dumbledore, I really feel for you being in this position after your last pregnancy ended so tragically, it is not what you need at all. And how rude of the midwife to keep you in the dark like that. As stripeycow says, when you are in this position, lots of us experience a very strong need to find out as much information as possible.

There's some discussion of cvs vs amnio on a thread not far below yours called "1:20 risk of Downs" which goes through some of the risk factors (including bloods and other factors) and what the procedures are like. There are also more detailed scans available which can give you more detail about your baby's state of health eg at 12+4 I had a fetal echocardiogram which gave me more information about the heart problems that were picked up on the nuchal scan - this might depend on your hospital's capabilities though.

IME experience, amnios/cvs are not usually carried out by obstetric consultants, but by fetal medicine consultants, which I think would be why your consultant would not do the procedure.

TooImmature2BDumbledore Tue 04-Oct-11 13:05:03

Stripey, I was quoted a risk of 1:50 with the CVS at my local hospital, nowhere near 1:100! I am in Scotland, so London isn't a great option for me. I don't suppose you've heard of anyone in Scotland with better results? I will ask the consultant about more detailed scans - they didn't say anything about nasal bone or blood flow or anything during the scan. FX for you with your results. Thank you for telling me about your experience.

Thanks Ghislaine, I had a quick peek at that thread last night but didn't read it all. I'll go back to it.

TooImmature2BDumbledore Wed 05-Oct-11 09:47:48

I've got the amnio booked for 17 Oct. It seemed like the less risky option and I was a bit late for the CVS at 14+5 today. It's not that long to wait (sort of).

The consultant said that if it turns out not to be Down's, then she would want to know what caused the abnormal blood results. She said it might be an abnormality in the placenta which they would need to monitor and make sure the baby continued to grow properly. Had anyone had this, and if so, what happened?

TooImmature2BDumbledore Tue 18-Oct-11 11:10:52

Fuck fuck fuck, amnio was yesterday, I appear to be physically fine but am now completely freaking out. Think was masking fear of results with fear of procedure before. Oh God.

shalo2 Tue 18-Oct-11 12:06:12

Hang on in there TooImmature...I felt the same. Never even thought of the possible results until the amnio was actually done. Did they say how long they will be?

TooImmature2BDumbledore Tue 18-Oct-11 12:13:26

3-4 days - hopefully I should know by Friday. Thanks Shalo. I had semi-convinced myself that it was all going to be fine, but I've lost that conviction now.

pinkytheshrunkenhead Tue 18-Oct-11 12:18:48

Have no advice at all but wanted you to know I am thinking of you x

shalo2 Tue 18-Oct-11 12:18:59

We had the same wait. I think the mind goes into overdrive after the procedure and you can't possibly imagine all will be ok. Try and keep positive...and busy! Xx

TooImmature2BDumbledore Tue 18-Oct-11 16:31:27

Ohmigod, the hospital just called and everything is fine! At least, they have ruled out Down's and Edward's and Patau's, and I haven't any indicators for anything else, so phew! Am so relieved and happy. I would be jumping up and down if I wasn't scared I would do Bean some damage. grin grin grin

cupofteaplease Tue 18-Oct-11 16:39:46

I've only just seen this thread, so sorry for the worrying time you have had, and sorry to hear about your baby. sad But how fantastic that your results have come back clear! I hope you can enjoy the rest of your pregnancy. smile

shalo2 Tue 18-Oct-11 18:59:26

Oh that is fantastic news TooImmature.....am so so pleased for you smile And how fab that you now don't have to wait until Friday to hear this news ! I hope you enjoy the rest of your pregnancy grin Xx

pinkytheshrunkenhead Tue 18-Oct-11 19:01:29

This is great news, I amso very happy for you all x

stripeycow Tue 18-Oct-11 19:59:37

Fantastic news, and how great you didn't have to wait until Friday. Enjoy the rest of your pregnancy!

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