NF test result - was ok with it, now unsettled

[heylottie]

Hello
This is my first baby. I am 37 years old, and have a high BMI

Anyway, I had my NF results back and they are 1:165. The actual NF was 1.2. Having lurked on a few threads lately I know that many mothers have much higher 'risk' and so I was not bothered, really. A 1 in 165 is less of a risk than having the amnio, and am not sure I would terminate if it did have Downs. Actually, that's not true, I don't know what I would do. What I DO know is that I would never forgive myself if the amnio brought on a mc

So people have been asking me what the result was and when I said quite a few have winced and gone silent. My boss even said 'my sister is 1:300 and she had it done. Are you sure.'

I am not going to have an amnio but have gone from feeling positive to feeling unsettled. Has anyone had a similar experience?

My results were 1:24 (aged 43) which sent the mw in a flap. As you say, the mc rate is higher, so with odds like that I wouldn't have amnio. (tho it depends on the consultant).

Thing is that it is only an indication. You could just as easily be the one.

With those sorts of figures it probably is worth working out what you would do - because if you wouldn't terminate then that completely answers your question as to whether to have the amnio (no point). If you would then the decision remains tricky.

I know people panic at those sorts of risk ratio, but having been through 2 pregnancies and infancies with children with a very high risk (something like 1 in 5 I think) (untestable) for something that has affected ds1 far more than DS, I would have been quite happy with those sorts of figures.

But it depends on your view really. You could try asking for a more detailed scan if you're worried to take a better look at the heart or something -I don't know how easily those are given- but would presumably be cheaper to the NHS than an amnio, so might be worth enquiring about.

Our results were 1:115(I was 32 and my partner was 33) following a triple test. We were given counselling to help us decide what to do which really helped.

They can further asses your risk at the twenty weeks scan by looking at the heart and the length of the femur.

We decided what we would do first if the baby had downs which helped us with our decision.

If you wouldn't terminate I would not have the test.

Is this the result from just the NF scan or a combined result based on NF and bloods.
If it's just the NF it might be worth having the triple test too as this may alter your risk and give you a more reassuring figure on the other hand it could also highten it and cause further worry.
It also might be worth asking for a detailed scan. Some of the more serious trisomys can usually be picked up on scans. Down's can be a little more tricky but at 15 weeks the femur can be measured as well as looking at the bowel and stomach, the heart is usually left until 20 weeks though.

Ah thanks for all your wise words - food for thought definately... x

Hello, to me those odds seem pretty good. We had a 1:85, with a combined bloods test and high nuchal fold measurement. But having had a previous baby with a severe heart problem and an un-named chromosomal abnormality, we did decide to have a CVS.
But as other posters have said, you may want to think carefully about what you'd do if you found problems. Sometimes people say beforehand 'oh, i wouldn't terminate' but once pregnant and faced with problems you need to make sure this is still what you think.
But a CVS isn't the only thing to help so don't go for it unless you really want to. They can scan more, and look for the nasal bone, check the heart, sometimes measure the angle of the baby's face etc.
Go back to feeling positive! Don't let others un-settle you.
I hope all turns out well for you, good luck.

Hi, just thought i'd share my story. My risk was given as 1 in 86 because of low PAPP-A - nuchal fold and other hormones were fine. I'm also 38. We felt the risk was too low to justify CVS which has a higher odds of miscarriage at my hospital. But we wanted to know more and after lots of research I ended up doing the integrated test privately and also going to the Fetal Medicine Centre for a more thorough scan where they look at several more markers inc nasal bone. The FMC result reduced my risk to 1 in 1619. The integrated came back at 1 in 370. My age risk is apparently 1 in 100 and that's only 30% accurate.

Not sure what the moral of that story is except that they can only give you risk factors based on statistics and can only judge that on the information their sonographers are trained to gather.

In our case we are reassured that the more reliable tests have put us firmly in the low risk bracket and are taking no more action. I don't know how many weeks you are now but it might be worth talking to the Fetal Medicine Centre for advice.

Bear in mind though that even at 1 in 86 my odds were 98.2% in favour of there not being an abnormality.

For me I would say - how would you feel about losing your baby from the amnio? If the feeling is greater than unsettled, then leave it.

Heylottie, how are you doing?

I was basically told that if my baby was born without down syndrome it would be pretty rare. She had a heart defect diagnosed at 20 weeks in utero. It is a very common defect amongst children with down syndrome.

Despite Prof Nicolaides being down the corridor and able to do the amnio - I still did not have one. This was our babe - she would be born and down syndrome was not something negative or scary to my husband and I. We knew a number of families who happen to have a child or family member with down syndrome and so knew pretty well what it would entail.

We have since learnt that the heart defect throws up a chance of about 1 in 5 of the baby having down syndrome.

It turns out we were the 1 in 5. But that wee little girl is now in mainstream school - a very healthy and incredibly happy well adjusted almost 7 yo with two younger siblings who adore her.

The scariest part for us was not the down syndrome but the heart defect. She participates in dancing, swimming and surfing. She does all the things you can imagine a little girl of 7 doing.

I knew there was nothing that could make me feel that an amnio was for me. I also knew it would not change the outcome dd1 would be born no matter what so that decided it for us.

Thank you all for your kind replies.

I have been pondering on my results and today phoned the midwife, basically to find out why my results were what they were (ie was it the nf, was it my blood, my age etc?)

She couldn't give me a definitive answer but was very reassuring. I have my 21 week scan in a fortnight and I am going to see if they can see anything that should give me cause for concern. Well, not concern exactly, i just want to be prepared I suppose.

I am not going to have amnio or anything, and I wouldn't terminate anyway. I expect most first time mothers worry about their baby... and if it is DS, it will still be the best. I know it! I think i just want to know, but won't risk further tests, so it's a dead end isnt it!!!!

It sounds like you have been reassured and supported in your decision not to have the amnio which is good
The scan will be very detailed and they will probably look at the heart, limb length, bowel and bladder etc anything physically wrong with a baby at this stage can usually be detected and as you've said you wouldn't terminate, a healthy baby (DS or not) will help to reassure you further.
Babies with down's can be perfectly healthy my 8 month DS included. He takes longer to learn things but pysically he's in great shape I myself wasn't brave enough not to have an amnio (after a 1 in 3 result) but having him was the best decision we ever made he's a thousand times better than the baby we had 'imagined'.
Having said all this you still have an excellent chance that your baby will be unaffected just wanted you to know that things we may percieve to be the worst thing in the world can sometimes suprise us.

I was in exactly your position, except that it was my second baby and I was 36, and they weren't doing nuchals in my day, so the risk assessment was purely on age. Anyway, worked out that amnio was slightly more risky, so I said no thank you very much. Midwife looked quite taken aback when I explained that I had no intention of taking a greater risk for the avoidance of a smaller and less important one.

Ds was born without downs, but over the years we have realised that he has another disability instead which was not distinguishable by any tests. Life is a gamble at the best of times.

Yes all the way through and I got REALLY good odds. The only way I could deal with it was to accept that what would be would be and it took nearly my whole pregnancy to get there but talking to my partner and not bottling things up really helped.

Dawnxx

Hello!
Good for you and your great attitude! Hope you stay positive. Our odds for our first son were 1 in 14 and he was fine. Our odds for our 3rd son (was 36 at the time) were 1 in 1000 and he appeared lovely and with DS so you just never know!!!
Good Luck