1 in 150

[hettie]

Had combined nuchal and bloods got risk of 1 in 150. Was told this is the threshold of high risk. BUT have read elsewhere a cutoff og 1 in 200, anyone know why this is different.
Am in total spin as to what to do- was expecting clear cut high or low risk, know so confused....

I had a result of 1:50 with the same test. I asked to speak to the consultant and found that very helpful. I saw him within the week of getting the results. Phone up and ask to speak to the midwife in charge of antenatal testing.

Or speak to ARC. A charity involved wiht offering advice about antenatal testing.

Hettie.

Stop spinning. Deep breath.

I am going to be very matter of fact. Apologies if softer language would suit you more.

What you have is a number. You have 150 future possibilities. One of those possibilities is a baby with Down syndrome. 149 future possibilities is a "normal" baby.

Those 149 future possibilities could contain any manner of other genetic conditions, or birth trauma, that is not tested for or forseeable.

Cut offs for labels such as high low medium risk are not really that helpful. Because if you had a 1 in 3000 risk, and you were that one, it is of no consolation that you had a label low risk.

Your choices are these.

Firstly, you continue without further testing. Either none at all, or the usual USS. The 20 week scan may show evidence of any problems, but the pick up of cardiac defects is nowhere near 100% - it is serious cardiac defects that cause most deaths in young babies and children with Down syndrome. So it may be falsely reasurring. It may also show that the foetus is profoundly abnormal. Which will either be helpful to you, or lead you to more difficult decisions.

Secondly, you go on to have amniocentesis. This is tricky. There is a 1% quoted risk of miscarrying from having the test. Bear in mind that your current risk is a 1 in 149 chance of your foetus not having down. So should you be very unfortunate to miscarry as a result of having the procedure
you are most likely to miscarry a normal foetus.

Thirdly, you can abort now.

None of this helps you out with the emotions that go along with these decisions. I really feel for you, it is going to be a very difficult time the next few weeks.

Oh, and cece has made the most sensible suggestion of all. You need to sit down and talk to someone about this at your hospital.

Hello Hettie

I found it more useful to think of my results as a percentage. 1 in 150 would give you roughly a 0.667% chance of having a down's (or other abnormaility) baby. That's a 99.33% chance that everything is just fine.

Something else to think about is that the chance of miscarriage (should you opt for a CVS or Amnio) is 1 in 100, which is greater than your odds.

Hope this helps

BK x

yeah, I know I know (at least the rational side of my brain does). I have had a very mixed journey to get here and one of my fears is a late term miscarraige.... I guess these reuslts don't help with that worry. Still am planning to talk to midwife and try and take some deep breaths!
Thanks all

hettie;

i would only have tests if the m/c rate was less than the risk of downs..ie; if i had a 1 in 70 risk of downs....

i personally wouldn't worry about a 1 in 150 risk.

relax and enjoy your pregnancy....

Hi Hettie, I had 1:140 from the same test. Was told this was high risk. I found it helpful to break down the result. I understand the blood result can be affected by a number of other issues e.g. BMI, bleeding in early pregnancy, dating of the pregnancy....

IMHO the nuchal is the most reliable indicator - my result from the nuchal was a pretty bad 1:27 risk of chromosomal probs.(I was 28 and the nuchal was 3.5mm). What was your baby's nuchal measurement? Do you have any other factors that may have affected the result?

Another recommendation for ARC (Antenatal results and choices), they are really helpful.

There's another mum on here who had a poor nuchal result and was considering CVS but was actually able to get detailed ultrasound (around 12 wks?) that reassured her, checking things like the heart, whether the nasal bone was present, the tricuspid flow was normal, and the ductus venosus was positive. The hospital were able to recalculate her odds, putting her in low risk (much lower ), so she opted out of the CVS. Perhaps check with your hospital whether a detailed scan looking at these things is an option? Might help ease your mind without your needing a CVS or amnio...

mme- yes NM have heard of that, assume it's only a london thing or I would have heard about it locally? I kno that they do it in London (Kings I think my friend went to...) am thinking of that as an option as nuchal was good (1.2mm), just Bhcg bloods very out of whack..

That's just v similar to this other mum's situation - she had good nuchal, it was the rest that put the results low.

Fingers crossed for you...

thanks, have looked into this option and only available in london privatley- have decided to go for it. Am hoping and praying that this changes things in teh right direction for us....

just to update (in case anyone needs info at later date). Went to fetal medicine centre yesterday, they look for 4 other markers, nasal bone, blood flow in heart etc. With the extra info risk came back at 1 in 1000. Am very very releived that any difficult decisions have been removed.For info I live in west country and the cost of my first combined test was 195 pounds, FMC was 150 (train fare included this is about same). As we are not offered combined test on nhs in my area I wish I had known the info about the extra markers as I would have gone stright to the FMC from the off not to my local BUPA...Still, not comaplaining as just so pleased to get low risk result

Hi Hettie

Good news! Very pleased for you, and glad you were able to get scanned there quickly. Hope the rest of your pregnancy goes well.