Risk Of Downs/Patau 1:13 chance

[jools70]

Hi all
At week 13 we had a scan the NT was fine at 1.1mm but the pappa and the hcg bloods were not ok. They gave us a 1:8 chance of downs or patau, we then had the Quad blood test and that has returned a result of 1:13 chance.
We are having our 16 week scan tomorrow and will have the choice of having the amnio at that time.
My DP thinks we should see if the scan shows anything else and if not, don't have the amnio, but I don't think I can go through the rest of the pregnancy not knowing.
Anyone had similar results and if so what did they do.

[janski31]

Hi Jools70

I am currently 18+4 I had a high nuchal fold reading of 4.6 at my dating scan, went for a private nuchal fold scan combined with bloods they measured it at 3.2 combined with bloods gave me a 1:1128 risk of downs. At 16+2 had my quad bloods done with nhs that gave me a 1:5 risk of downs. I chose not to have invasive testing for personal reasons but I did have another scan with the nhs at 15+4 to see how all was progressing and so far they haven't found anything wrong and nuchal has reduced to 4.
My next scan is next wed and hopefully all we will be fine.
I know how you feel though because nhs are saying I am high risk where my private tests say I am low risk.
I thought you could only have the quad bloods done after 16 weeks? I might be wrong though.

[AbiAbi]

Hi Jools, sorry you're in such a shit situation- it's a shock when they tell you isn't it?!

I am currently 21wks, was given odds at 12w of 1:65 for Downs. It was a huge shock as I am only 25, and the measurement seemed fine at 2.5mm, it was mainly based on my bloods.

We decided not to have the amnio or cvs, for lots of personal reasons. The consultant said to us 'if you have the amnio, make sure beforehand you know what you'll do if the baby has Downs because once you know theres no going back...'. That struck a real chord with me.

Out odds have now been reduced to 1:120 as there are no soft markers for Downs, but it's still a worry.

I cant tellyou what to do - but please do talk to your partner as much as possible, it's your choice, and his choice only.

One thing my DH always said was if you had 65 lottery tickets on the table and 64 were winners and one was t, you'd be happy with those odds wouldn't you?

Good luck

[jools70]

Hi janski31,

Apparently you can have the Quad test from 15 weeks and a lovely lady at the Bio Chemistry Dept said for me to call her the next day and she would let me have the results, 1:13 is better than 1:8, I think around a 93% chance of the baby not having Downs or Pataus.

I hope and pray that your baby will be healthy I wish you all the luck in the world.

When they give you the news it really is a shock, I just hope we make the right decision tomorrow. We will only make up our minds when we see the scan.

Thanks for your reply x

[peanutpie]

Hi Jools,

We had a result of 1:5 for the blood and nuchal fold. Our nuchal fold measurement was 2.4mm and I am 37.

We did actually have the CVS but it came back OK.

I hope your scan is clear tomorrow.

[jools70]

AbiAbi you are so right, we are now looking at it in percentages as it seems so much better when you say there is a 93% chance the baby will be fine.
I am 39 and I have wanted a baby for so long.
My DP and I are just worried about MC, but with the amnio I think the rate is 1:100 so it's pretty good odds.

I hope everything goes well for you x

[jools70]

Peanutpie I'm so happy for you that the results came back clear it must have been a worrying time for you both xx

[janski31]

jools70

I think it will all be fine for you as your nuchal fold was well within the normal range, let us know how you get on. Good luck x

[jools70]

I will and thank you all for your support, the scan is at 9am at St Thomas' DP has taken the morning off incase I have the amnio as he wants to make sure I get home OK afterward bless his little cottons!

[EMS23]

jools70, I'm sorry you're going through this. I was given 1:21 after the triple blood test at 16 weeks.
Had the amnio at 17 weeks and am now 21 weeks after receiving the all clear.

Good luck and let us know how you get on
xxx

[jools70]

EMS23 that is such great news and very encouraging, thank you x

[Chynah]

It's an awful thing to go through but all of these bood tests/scan resuts are just risk/probablities & many characteristics of Downs don't necessariy show on a scan - the only way to know for sure is to have invasive testing (amnio/CVS) and theres no point in having that unless you know what you will do with the results.

I had a 1:12 risk with a 2.6mm nuchal fold at the age of 40 (my bloods were rubbish) - I opted for CVS and thankully all was OK and I now have a gorgeous baby girl.

Good luck whatever you chose.

[EMS23]

jools70 - thank you. I also meant to say that it's worth you asking your actual consultant what his miscarriage stats are. My hopital was 1:200 and my consultant hadn't had a woman miscarry following an amnio in over 100 years.
It doesn't mean it won't happen but it helped me, knowing those figures which were much more relevant to me than the national stats
xxx

[oliviacrumble]

I was told that the overall miscarriage stats are actually closer to 1:1000 (can't remember the name of the study, but was published in highly reputable journal).

I will be having an amnio at 16wks, due to being ancient!

The very best of luck to you and your dh tomorrow, whatever you decide to do.

[EMS23]

Over 10 years!!! 100 years??? Sorry for the typo!!

[porcupine11]

My friend had 1:25 from nuchal/bloods/heart scan, then she did have the CVS and it came back fine, and the baby does not have Downs.

If you want a second opinion before deciding on CVS, I'd recommend the private scanning service at the John Radcliffe hospital in Oxford, as they're one of the best in the world, the consultant does them and he is so thorough and so knowledgeable, and looks at lots of different indicators.

[sam26oscar]

hi, i was reading your post jools and just wanted to put my experience forward with my ds1 the ratio was 1: 100 for downs, i decided to go through with the ammnio as my dh was in the forces and we needed to know for definite. we had the results a few days later which came back negative for downs, but then i m/c that same weekend at 17 weeks. So althought the odds of m/c are quite low it can happen.when i was pg with DS1 i opted for private nuchal scan which came back 1:8045. i hope it all goes well for you

[AbiAbi]

Jools just wanted to send you some good luck wishes for today- I found my 16wk scan so stressful, so I can imagine how you are feeling

Your posts are really positive and strong; I hope everything goes well for you, I'm sure it will.

[ChoChoSan]

Hi Jools,

Just to say that I was given 1:5 odds for Downs last Friday on NT measurement alone. I went for another scan and bloods yesterday - fold thickness had decreased, and bloods put me at 1:33 now.

I had a CVS and I am awaiting the results...for us we have decided not to waste the emotional energy thinking about what we would do in the hypothetical case that results are bad, especially as I imagine that one might have a very different opinion when something is a reality, rather than a hypothetical possibility... the most important thing for us that we knew for definite, in the hope that the result could lead to an anxiety-free pregnancy.

I'm wishing you all the good luck in the world...We were in a real pit of despair for the past few days, and its awful to think of others going through it. Take care.

[jools70]

Hi all sorry I didn't respond yesterday just felt exhusted must have been all the worry. We went ahead with the amnio even though once again the scan and the baby looked perfect, baby was happily playing with it's feet which was a lovely sight to see
I can't thank you all enought for your good wishes.
We will have the results back on Monday.
And I have requested that I can work from home that day as I want to get the news and take it in in my own time, if it is good or bad news I know I will burst into tears so better no one witnesses that.

Thanks again to you all and I will let you know the result xxx

[janski31]

Hi jools70

I hope your feeling ok and taking it easy thinking of you x am sure everything will be fine x

[jools70]

Received our results from the Amnio and it was not good news.
Our baby has Downs Syndrome, we are devastated.
My partner came home early from work and we have just sat here looking at eachother not knowing what to say.
We are meeting with the midwife tomorrow at 2pm to discuss things.

[cardamomginger]

I am so so sorry Jools. My heart goes out to you. Big hugs XXX

[allstarsprincess]

Jools, I am really sorry to hear your news.

Not sure if you are aware of ARC (Antenatal Results and Choices) They have experience in helping women who have been or are in your situation.

They helped me when I was faced with similar news at 30 weeks and 14 weeks.

www.arc-uk.org/

They offer non-judgemental support and advice.

Xx

[janski31]

Jools, I wish I could say something to make you feel better... just want you to know I am thinking about you. I so wish there was something I could do to help.

Take as much time as you need you sound like such a lovely person lots and lots of hugs x

[Faithbaby]

Our first NT scan was 3.7 which placed me in the risk category. My blood also came back positive with a 1:13 chances for Downs. We decided against amnio because of the risk of miscarriage and since we have had 3 previous miscarriages, we accept our child as a gift from God, knowing that he has made everything wonderful and perfect. Hugs to all you other ladies out there going through similar challenges.