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Original poster

Help - high risk of Downs after Triple test!!

27 replies

melslinky · 12/05/2009 19:58

Hi,

I am now a bit lost!

This is my second pregnancy (which was fine and I was deemed low risk 1:5000). WIth this pregnancy I have a 1:242 risk of having a downs baby.

With my first pregnancy the hormone levels came back:
AFP MoM - 1.76
Serum HcG - 1.14
ue3 - 1.36

With this pregnancy I have a reading of:
AFP MoM - 0.73
Serum HcG - 2.36
ue3 - 0.87

With Downs babies I know that, in the second trimester AFP and uE3 levels are, on average, low (about three-quarters that of unaffected pregnancies) and inhibin and free ß-hCG levels are, on average, high (about double that of unaffected pregnancies). These are all indicating quite highly to me that my baby is Downs.

Do you know of any other reason why the HcG would be high and the AFP and ue3 would be low!

I am beside myself with worry and am not sure what to do as I don't want to risk a healthy baby with amnio. Has anyone else been in a similar situation? What was the outcome?

OP posts:
thisisyesterday · 12/05/2009 20:03

1:242 is really really not that bad.

i guess what you need to think about is what you would do with the information you got from an amnio.
if you would keep the baby regardless, then why risk it?
if you feel that you couldn't keep the baby, or even if you just wanted to know so that you could prepare yourself then find out.

but that's not somethjing anyone here can tyell you, you need to talk to your husband/partner.

i do know there are a lot of mn'ers who have had "worse" odds than that and gone on to have healthy babies.

thisisyesterday · 12/05/2009 20:04

i'm sorry I want to change that.

I said gone on to heave healthy babies and as I hit reply I thought well wtf isn't healthy about a healthy baby with down syndrome.

so I apologise! and change it to "gone on to have babies without down syndrome (or any other syndrome/disorder)

nigglewiggle · 12/05/2009 20:06

IIRC my first pregnancy was 1:800, by my second pregnancy - two years later, the ratio had dropped to 1:400. My MW explained that this was purely due to my increase in age. I believe this is an important factor in the calculation. So the drop won't just be due to the blood results.

Sorry you are going through this and I hope you get the help and support you need.

Original poster
melslinky · 12/05/2009 20:08

Thanks - I know that I have a 0.4% chance but at a lost of what I am to do and what to do if it was positive as I can no longer think about my husband, me and the baby - I have my first born and his life to consider...

OP posts:
Original poster
melslinky · 12/05/2009 20:10

It will only have been 20 months between the births so the risk due to my age has gone form 1:3500 to 1:1200 so it is definately to do with my hormone levels this time around...

OP posts:
itwasthepanelinthedoorofcourse · 12/05/2009 20:21

Are you overthinking this, I wonder?

You ask if anyone knows of any other reason why the HcG would be high and the AFP and ue3 would be low (other than a baby with definite Downs). Surely there must be loads of other reasons? Otherwise, having them that way round would mean that the the science would give you a 1:1 chance of Downs - i.e. that would be the definitive test for Downs and we wouldn't need amnios. As it is, all those values do is leave you with a 1:242 risk - still vastly more likely NOT to be Downs, than to be Downs. That implies htat your blood test results must be associated an awful lot more with babies without Downs, than with babies who do have it.

Can you talk through your results with whoever did the blood tests? I wonder if that might help.

cissycharlton · 12/05/2009 20:23

My risk was much higher and my baby was fine

Original poster
melslinky · 12/05/2009 20:24

I will call them tomorrow.

They won't go through my results in conjunction with my first born - but other practices would take both into account...

OP posts:
Original poster
melslinky · 12/05/2009 20:25

cissycharlton - was it your first or second pregnancy that the risk was higher? WOuld like to know from people who have had a low score and then a high?

OP posts:
Eddas · 12/05/2009 20:35

i've had two pg's, the first gave me a high risk 1:240, after the 2nd scan that risk went down to 1:360 as it looked ok (no indicators for downs) when I went to see the consultant about our high result he was very dismisive of it, saying that it was no risk at all really and that they were not sure why a non-downs baby came out with a high risk IYSWIM.

With my 2nd pg the risk was 1:50,000 or something so totally different.

My age with pg 1 was 26 and pg2 was 28 so no real reason for a high result.

Are you going to see someone about the results? I know it's easy to say but do try not to worry, that result really isn't too high a risk. The way I looked at it was that I wouldn't bet on a horse with those odds. I know that's simplistic but it helped me

Original poster
melslinky · 12/05/2009 20:39

Thanks Eddas- that has helped a lot! I am seeing a consultant to look at the babies heart on Friday and have an 18 week scan which a consultant will also chat to me...

OP posts:
TigerFeet · 12/05/2009 20:42

I recently got a 1:75 risk factor and refused the amnio. I was offered, and accepted, a detailed scan with an expert, to look for soft markers. None were found.

I'm now 22 weeks pg and have decided not to worry about it. I've had a couple of detailed scans now and two separate sonographers, one of whom is an expert in the field, can find anything wrong with my baby.

Perhaps if you don't want to risk an amnio you could ask for a detailed scan to look for markers?

1 in 248 is a less than 0.5% chance, I know it's easier said than done but please try not to worry.

I have no idea about the results but I would imagine there are multiple reasons for high/low results, which is why they can't be more specific after blood tests.

itwasthepanelinthedoorofcourse · 12/05/2009 20:45

I had a higher risk with my second pregnancy over and above the increased risk due to my age. Much higher according to the triple test, but nothing like as high (though still higher than the first time) once the nuchal scan and earlier blood tests (two sets) were taken into account.

sachertorte · 12/05/2009 20:54

Melslinky, just as a bit of an aside, you said "I have my first born and his life to consider..."

Your DS1 s life would only be enriched with a baby sibling with DS! Do you have contact with children with downs? Or adults? Yes, they may have various health complaints but tbh there are far worse heath problems a baby could have. Life is a gamble, there are no guarantees! The ambio does not test for everything!

I was brought up in a large family where one sibling had a life-threatening condition and we all became better people for it, with a few of us going on to working full time with people with learning disabilities.

So, imo, you don´t have to factor in your ds so much to your decision.

thisisyesterday · 12/05/2009 21:01

agree, you could rule out down syndrome but still have a baby with any number of problems that aren't shown up pre-natally.

either of your children coul dhave an accident leaving them disabled in some way.

that said, if you feel strongly that you could not have a child with down syndrome specifically then I would say you need to have the amnio so that if a termination is what you want you can do it sooner rather than later.

you know that no number of anecdotes on the internet will make any differnece to YOUR child. we fcan't tell you any more than you already know.

CoteDAzur · 12/05/2009 21:17

If you knew this baby had DS, would you abort?

If so, you probably should consider an amnio.

re Risks - What matters is the miscarriage rate of your hospital, not the global average, which by the way is grossly overstated.

A recent study, led by Keith Eddleman, MD, of
New York's Mt. Sinai School of Medicine, and published in the November issue of Obstetrics & Gynecology, sought to determine if amniocentesis still has the 0.5% miscarriage rate (one in 200 pregnancies) that it did 30 years ago, when the last significant research was done. Dr. Eddleman offered amniocentesis to 35,000 pregnant women; 3,000 women opted to have it performed and the outcome was the same for both those who had the test and those who didn't -- about 1% of the women in both groups miscarried.

In this study the amniocentesis-related miscarriage rate was 0.06%, or one in 1,600 pregnancies -- significantly lower than the 0.5% rate that came out of studies performed in the 1970s. Since then, there have been many innovations in amniocentesis safety, the most significant being the use of ultrasound technology during the procedure - doctors are able to view the baby and therefore determine where to insert the needle.

From here

alittleteapot · 12/05/2009 23:12

I had a low PAPP-A which brought my risk (with a normal nuchal fold but a high risk age - 38) to 1 in 86. Felt this was not high risk enough to risk CVS. Ended up going to Fetal Medicine Centre in Harley Street for a more detailed scan where they can also look at nasal bone, heart, and a couple of other markers. My risk dropped to 1 in 1619. My age risk alone is 1 in 100.

There is quite a lot of debate at the moment about the whole screening thing - the current methods are sending too many women onto risky invasive testing. I've heard the NHS is thinking of lowering their "high risk" boundary from 1 in 250 to 1 in 150 for this reason.

Bottom line is though these are only risk factors and you might always be that 1 in whatever number - even if it was 50,000. In that case you might as well go straight for CVS or amnio to get a definitive answer.

In your position I would strongly consider getting the FMC second opinion and, if you decide to do CVS, having it there too as their miscarriage rate is extremely low.

Hormones can be high and/or low for all sorts of random reasons, but there's only one way to know for sure.

Good luck.

Isthisoneforreal · 13/05/2009 22:31

melinsky. In a very similar position so can empathise with you in your dilemma.

Original poster
melslinky · 14/05/2009 07:58

what do you think you will do Isthisoneforreal? I am having a cardio scan on the babies heart on Friday and then a more detailed scan at 18 weeks to pick up on any 'soft markers' and we will decide to do an amnio from there.. Just wish I knew one way or another but really don't want to risk an amnio - let me know how you get on.

Is this your first pregnancy?

OP posts:
ilovemydogandMrObama · 14/05/2009 08:18

Agree with Cote.

when I had amnio, the Professor said that miscarriage rates improved at maternity hospitals where there were experienced doctors/specialists doing it.

Also, you may wish to visit the antenatal choices board.

heron22 · 14/05/2009 09:36

if you can get to london or live in london, i can highly recommend the Fetal Medicine Centre. i had my CVS done there. they also do amnio and they are very good.

good luck!

only pursue more tests if you are going to abort if the baby has downs. if not, what is the point of more tests?
this is a difficult time i know.

cory · 14/05/2009 10:10

agree with everybody else: first sit down and decide what the tests would mean in your case

I had a fairly high risk in my second pregnancy due to age

weighed this against miscarriage risk of amnio and found that it wouldn't make sense to me to have it, as I wouldn't abort anyway and the amnio risk was also fairly high

in the event, both my dcs have turned out to have a totally different disability that is not detectable by any tests

Isthisoneforreal · 14/05/2009 13:17

Second pg. First time I was 39. Risk was 1:1200. This time 41 risk is 1:190. Nuchal and PAPP-A low, HCG high.

Have booked CVS for next thurs. MC rates at my hospital same for CVS as for Amnio, so no reason to wait. Rate in CVS was 2 in 350 tests and both pgs were already "abnormal".

Would probably not abort if DS shown, but need to know so I can get my head round it. Otherwise I will worry for whole pg and would prefer to look forward to meeting the baby, not dread the unknown. That's my reasons. Everyone has their own view. You have to decide what's right for you.

alittleteapot · 14/05/2009 14:03

the age risk factor is huge in these stats but apparently is only about 30% reliable. it's funny, at 12 weeks I wasn't sure what I would do if there was a definite abnormality. Now I'm coming up to 20 I'll take what I'm given, feel totally at one with that.

Directskiandsun · 14/05/2009 14:15

I haven't read all of the foregoing but have you had/been offered a nuchal fold scan? Is this still considered a good indicator? My youngest is 9, so I may well out of touch but perhaps look here for some info - good luck tomorrow!