V. Distressed. 2 miscarriages, finally get to 12 weeks but now they want me to have an amnio

[Wills]

I really really need to talk to someone. I've come into work after crying most of the night cos I need to be occupied. They don't know I'm pregnant and I daren't let them find out yet.

Found out last night that baby's neck is a tiny bit thicker than normal. If I was 34 this wouldn't register as a risk but because I'm 36 it drops the score to a 1 in 155 chance of being Downs therefore I'm being advised to have the amnio. 14 years ago my mum had a cvs, 2 days later she misscarried, 3 days after that she had a letter to say the baby was fine. I've carried a fear of amnios and cvss since then. To me a uterus is rather like a balloon and balloons and needles don't go well together.

The consultant has assured me that although the national risk is 1% (i.e. greater than that of the child being downs) at their hospital they've not had a miscarriage through amnio since 1997. My brain immediately reacts with the thought "So - I'll be the first one then!"

The worst bit is that they gave me pictures of the baby. Loads of pictures, pictures of it waving, closeups of its face - everything. How can you give someone pictures of something you're then going to ask them to put at risk possibly kill? I'm soooo confused as to what to do.

when I was offered an amnio - DH and I sat down and our basic view was would the outcome effect anything? - ie if we found out there was a higher risk would we abort or maintain the PG. for us we decided it wouldn't be an issue. so therefore didn't have the amnio.

i'm advising u the same really - if you're not worried either way PG is stressful enough do u really want the added stress?

it's a v tough choice. will u have the 20 week scan as well to check?

Sorry to hear about this Wills. I too had 2 miscarriages before DS2 (now 11 weeks) and can understand something of what you're going through. One thing to consider is what you would do if an amnio did show the baby had downs - if you would never abort then there is no point having the procedure anyway. The chances are hugely against this being the case anyway. Are you anywhere near London? The Fetal Medicine Centre (google for website) offers a very thorough procedure that combines a nuchal test with blood test to give you a far more reliable indication of risk. There may be similar places near where you live otherwise. Some people on Mumsnet have had this procedure after being given increased odds on their regular nuchal test and have been greatly reassured (and gone on to have healthy babies). Best of luck in whatever you decide.

I'm with munz on this - we decided against amnio because we knew we didn't want to be forced to make a decision if the outcome was not what we hoped.
If, however, you feel you can make that decision and not beat yourself up either way then go for it.

Oh thank you. I talked through what we would do. Dh is pro having it terminated if it had downs but would also be supportive if I could not. His view is that we already have two girls and that whilst bringing a 3rd into the world would lessen the amount of time we could lavish on each child bringing a 3rd with downs would seriously restrict this amount. I agree with him but have absolutely no idea if I could go through with it at the end. I can feel this baby moving already, and I'm sooo in love.

Azure - I need to go looking. The blood test results come through tonight but the consultant was very pessimissitic about the possibility of them changing the results. He's soooo incredibly keen for me to have this amnio. He just doesn't see the risk.

A risk of 1 in 155 is a risk of less than 1%! 154 out of 155 people in your situation are carrying babies who do not have Down's.

I wouldn't have the amnio or CVS in your situation, with your stresses, unless you feel quite strongly that you would choose to abort a baby with Down's. (Which is a perfectly valid choice, obviously. It's just worth being clear about your plan, as much as you can be ...)

I second the recommendation of the Fetal Medicine Centre. They're lovely folks, and lots of people go there for a second nuchal fold, after having had a bad result elsewhere. It's run by the professor who invented the nuchal fold, so they really are cutting edge.

Oh wills, sorry that this is happening to anyone but doubly sad that its you.

What a horrible horrible decision to make. I think you need to weigh up the two worst outcomes - sorry.

1. you dont have the amnio and the baby does indeed have downs
2. you do have the amnio and miscarry

I know that is a Sophies Choice but...

Also, did they look at the bridge of the nose? You could clearly see the bridge and a well defined nose on my baby and this always reassures me (Nicolaides told a friend of mine that it is an excellent indicator for Downs).

Remember they do adjust the test massively for age.

If I were you I think I wouldnt have the amnio - simply because my mum didnt despite being told she had a 1:4 risk of having a downs baby at 44 - ok, she's mad but that always stayed with me - her bravery not to risk her pg to do it.

xx post away I have promised myself to get of mumsnet this am but will check back x E

Here you are, just seen your message on the August 03 old-timers thread Wills.
I'd agree with Munz, although I think on the other thread you indicated that you were not sure you would want to continue the pregnancy if a chromosome disorder was diagnosed. You have to think of what you would do if the news post-screen was bad for you.
Also agree with Azure that if you want to feel in the safest of hands then the Centre for Fetal Medicine (Prof Nicolaides) is the place to go, asap.
Without your sad family history of post-screening loss I have to say I share your instinctive concern about needles and amniotic sacs, it was a factor in our declining invasive screening. As we have both fallen foul of the statistics arguments in our time I also agree with your "yeah right, so it's going to be ME then" reaction to your local hospital's very impressive amnio record.
Wills, it really does boil down to whether you would terminate the pregnancy after the "wrong" result. I said on the other thread, nuchals are good as far as reassuring people about a small nuchal translucency. I do feel they cause a lot of worry when they deliver their high rate of false positives though
Keep chatting here if it helps, especially as you are stuck at work with no-one to confide in. XXX

wills have you thought of having a private scan or a second opinion scan at a different hospital, quite often this will produce a different result possibly better

this happened to my friend and the second scan gave a completely different result and baby was fine,

if you are in london the foetal medicine centre is excellent they specialise in looking at the nose bone too as it is the team from Kings and they developed this test

someone on here will have their contact details
good luck and don't feel pressured do what you want to do

sorry did not read whole thread others already suggested

DH has just written me an email telling me to read the book "no matter what" to our girls tonight. Basically its a book where the mummy figure says to the child figure that "I always love you - no matter what". He's trying to get me to focus on our two daughters but instead its made me think how can I potentially kill my baby. How can I put it at risk. I need to find this fetal Medical centre. I need a second opinion.

Go to the fetal med centre!! ring them today!!

here in case you don't want to google at work

Thanks Marina, will they demand a referral? Can I just pay and go along. At this point in time I think I'd remortgage my house if it was needed.

If you feel you could not terminate this pg no matter what, then don't have the amnio. I was in a similar situation as you with ds3 and chose not to know if he was DS as I didn't feel i could reject any baby of mine simply because he was not perfect.

Your dh is missing the point. If you love your dds, you will also love your new baby no matter what s/he is like. And love isn't finite you know. You will have enough to go round.

But that is just my opinion.

No referral needed afaik, so long as they can see the colour of your money. They are well worth it, is the wider verdict (never used them myself but lots of Mners have).

Use the approaching CVS cut-off point to your fullest advantage to get an early appointment. XXX

Bupa women's health centres also do them (I went to one in Bristol) worth a google?

Have booked a 14.30 appointment at the Fetal clinc on thursday. Could have had today but with a temp doc so have opted for Thursday instead.

Willis,

I can only give you my past experience as this is a tough decision and one only you and your famil can make.

I had my DD at 22 and at the time was given a high risk number. I think it was 1 in 160. The choice was ammnio but I had to really consider what I would do had the outcome been a definate that she had downs syndrome. After suffering miscarriages and the like I realised that I had so much love to give that child that I would not consider a termination anyway and as the likelyhood of miscarrying was 1:100 after an amnio I decided not to have it and continued. As it happens I completely forgot about the risks and she was born healthy and without downs syndrome. I only remembered once someone reminded me of the risk.

Now I am pregnant again and have found his baby has been affected by ABS and has no arm. A big part of me feels that I wish I had never known about it as it has given me time to dwell upon it and I'm no better prepared for knowing as we will have to face the hurdles as we get to them. But I know we will cope you always do!!!

I guess what I mean is you need to think about what you would do even if you got a positive result and go from there. It may not be worth knowing or it may be just too significant for you not to know.

I refused an amnio for nuchal neck results & blood test results afterwards for ds4. I just wanted my baby - problems or not. I was very nervous in the 2 wks before the birth. I had a cvs & amnio with dd3 - I wouldn't have terminated so after the tests I thought what's the point of the extra stress. Wills talk it through, write points down & make a choice that you & dh are happy with. Kind wishes xxx

Agree over the statistics. Statistically speaking at the moment we'd be better off not doing the amnio. However having had an enormous run of bad luck recently (like for the last 18 months) I've become very pessimistic/skeptical. So for me the choice is miscarrying a Healthy baby or carrying to term a downs baby. We've never considered the impact a downs baby would have so I'm definitely not in a position to make a reasoned choice here yet.

ENID. Meant to say. The one clear over-riding memory of the scan yesterday was the amazement I felt at seeing my baby's face i.e in profile - its nose. Its beautiful and very much present. I kept saying wow look there's its face and nose.

Wills, reading what you have said I just wanted to say that in your situation I don't think I would go ahead with the invasive testing and I actually went ahead with a termination in August. We had a 12 week scan at Kings and we could see clearly ourselves from the scan that the baby didn't have a nasal bone and had extra digits, before they even told us there was a problem. I found myself almost praying it was Downs as we knew we were going to be confronted with bad news. Unfortunately they told us they thought our baby had Trisomy 13 and her condition was incompatible with life. We went ahead with a CVS which Professor Nicolades did and we really appreciated his frankness, as he made it quite clear to us our baby would not survive. The reason I am telling you this is because Prof Nicolades works at both Kings and the Fetal Medicine Centre and he (and I assume his staff) will give you clear information about your particular case. It was hell going through what we did, but even before our CVS we were not in any doubt that we would be getting terrible news confirmed, which is totally different to your situation. Having been through invasive testing and termination, if I was confronted with the same odds as you, I do not think I would go ahead. And I have thought about this situation a lot, as if I do get pregnant again, although I am only 31 at the moment, I will always be high risk now.

Obviously at the end of the day, we all have to make our own decisions, so good luck with whatever you decide.

Wills have you been told what the actual NT measurement is? I would definitely have this info (though I wouldn't give it to the ultrasonographer before the scan) on Thursday. You will also need to be able to tell them exactly which blood test you have had - there are dozens of them now. Good luck.

Thanks majormoo. You've helped. Just got to make my way to Thursday. Its easier said than done but need to put this to one side and wait until then. Just wish I could stop my brain.

Really. The thickness was 2.26. As to what bloods I don't have the foggiest.

The consultant said that anyone regardless of age with a thickness of 3.00 or above was at risk. What's causing the issue here is my age. I haven't looked enough into this but can't I just have thick necked children. DH is not overweight but has a 17inch neck (he's a carrot, size 6 feet but everything increases from there upwards). Both my girls have big heads but that's the same as my dh.