Down's test has come back - we are at high risk :(

[vanimal]

Hi,

I am 14 weeks pregnant, and have a stressful pg with some early bleeding and early scan. I have also had hyperemesis again (this is my 3rd pregnancy).

I am 37 years old, and had a call from the screening unit - my scan showed normal nuchal fold readings (ie. not indicative of Downs), but my blood test results show I am at high risk :(

The cut off point is 1/150, and we have a risk of 1/120. It's not massively high, but I am still a bit shocked. We have decided not to tell anyone about this, as the bleeding was a worry for family anyway, and we don't want to stress my parents/siblings out if there is no need for it.

I usually share everything with my best friend, but wierdly for me, I am keeping this all quiet and digesting the information with DH, but not with anyone outside of the situation.

We have a counselling appt tomorrow morning, and have already decided we would like to have an amniocentesis to confirm the diagnosis either way.

I am a bit numb about it all - we have had 2 stress-free pregnancies, so this is a real shock to the system for me, although I may just be over-reacting.

We have carried out announcing our pg to family and friends as normal, and I am burying my head in the sand about what future decisions we may have to make regarding the pregnancy/baby if it does have Down's syndrome.

So I have no idea why I am posting this really. Does anyone have a similar experience? What was the outcome?

[Mikocat]

Hello, I just wanted to let you know that I was almost in the same boat as you. I am 38 years old and, like you, had a totally normal nuchal fold reading. After the blood results came back I was told that I had a risk factor of 1/125.

The midwife that I saw pre-amnio was really nice and explained that it was mostly down to my age that the risk factor was so high, everything else would not have been cause for concern in a younger woman.

You, like me, have a REALLY good chance of everything being fine - something like a 99.2% chance in fact!

I had the amnio, because I couldn't have stood not knowing and while it was stressful I am glad that I did. It was all over quickly and the preliminary results came back in less than 36 hours!

All the best, the odds are massively in your favour and you will find lots of support here if you need to offload!

[BlueAndRedMakePurple]

I can offer no real advice, but I can hold your hand and tell you about my best friend who got a 1/5 risk (combined from NT and bloods), she had the amnio which showed a very healthy baby girl. Said baby girl is now 3 weeks old and beautiful.

[SoozyWoozy]

I had a similar experience a few weeks ago - my Nuchal was fine, but I had a high hCG and low PAPP-A which apparently was 'classic' of Downs. My risk was 1:78. I had an amniocentesis and got the all clear for Downs, Patau and Edwards syndromes. Most amnios come back all clear.

My midwife put it in percentage terms - I had a 98% chance that everything was clear and that helped to rationalise it in my mind, although I was worried sick and it was such a difficult few weeks waiting for the amnio and then test results. You have a less than 1% chance that you're baby has Downs, hopefully thinking along those lines will help you get through it all. The girls over on the Antenatal Choices board were wonderfully supportive to me.

Good luck and keep us updated x

[cheesenpickle]

I had a similar experience (i was 40 during pregnancy, 41 when i gave birth) and had heavy bleeding at 7 weeks and early scans. My age related risk was 1/100 and after the tests came down to 1/60. I also had the amnio but was sure of what I would do if the test had been positive. . My husband was very positive because he said in percentage terms the outlook was good, I couldn't help but think the worst and waiting the 3 weeks to have the amnio i found really stressful. We didn't tell anyone except our parents about the pregnancy before the amnio results. The amnio was really straightforward and painless and the results were back in 36 hours. I now have a healthy 9 mth old son.

The odds really are in your favour, good luck xx

[vanimal]

Thanks for your reassurance, it's really heartening to know it works out fine in the end for most.

It's the waiting that's so difficult - I want the counselling appt and the amnio over and done with, I am not happy about the increased risk of miscarriage that comes with having the amnio done, but I do want to know for definite either way.

I hope this all ends ok.

[mamababa]

This happened to me last summer but my risk was 1 in 25 even though my nuchal scan was fine. I was devastated, like you we had told everyone. To make matters worse we were out of the country on hols when I got the call. Decided on amino rather than CVS as the risks are lower slightly for amino. Had mine at 15 weeks as I was offered to go to our nearest specialist unit who can do them a week before my local hospital. Was terrified as I thought that the blood result must be terrible as my age on risk was something like 1/150 (I am 38)
But at the end of the day it's not it's just risk and 1/125 means 124/125 are fine. The amino itself was fine doc was great. Ask about the miscarriage risk for your hosp and your doc as 1% appears to be the universally quoted number. The risk at my hosp was really low as what you have to also tell yourself is that the pg's having amino are inherently high risk. My hosp said they couldn't even tell me when the last mc was of a 'normal' baby. And also remember that if someone has an mc 12 weeks after amino it's still counted in stats even though it's clearly nothing to do with the procedure
Ask how many they do also.
Try to remember that the Odds are in your favour hugely for a neg screen. It's hard though I know, big hugs OP.
I got results in 24 hours all fine

[ardenbird]

As others have said, turn the numbers around. I had a 1 in 23 chance (because of admin error, my scan was too late to do the nucal, so it was all based on bloods and my age, 38), and it was very reassuring when the consultant told me that there was a greater than 95% chance my baby was fine. For you, that's greater than 99%!

I had the amnio, and everything was fine.

Also, you can ask about their miscarriage rate as mamababa says. At my hospital, it was 0.7% with an amniocentesis, and 0.5% without. So only 0.2% difference. See if they know the without amnio rate as well -- it really is the difference not the absolute rate that means something!

[vanimal]

We had our counselling appt this morning, and I am feeling much better, we've both been reassured.

The specialist midwife was lovely, she talked through the results slowly, DH thankfully did not mention my (vaguely) medical background, so everything was explained at a level I could understand and digest.

The nuchal scan measurement was just 1.7mm, so well within the cut-off point of 3.5mm for increased risk. The blood results were all within normal range, but the pattern of what was high and what wasn't was the issue.

I have had recent vaginal bleeding, and this may be a factor in the results, plus the increased risk with my age. She did say that if I had had identical results with my 2.5yo DD, I would not have been flagged up as high risk as I was under 35 then.

So we are really reassured, but will be going ahead with an amnio - booked on for 2 weeks time on Tues 6th March.

I actually had a big cry because of my ongoing morning sickness, and she was lovely about that too :-) I am trying to eat more now, and having had the counselling appt really is a weight off my mind. Just going to sit tight and wait for the amnio now.

I'll keep you updated, but thank you for all the messages yesterday, they really, really did help.

[joosiewoosie]

Good to hear you found your appointment as reassuring as we did when we had ours. The statistical way of working out 'high risk' is a numbers game, and not a very nice one - doesn't feel much like a game, does it?

It sounds like your age is the main factor here -and I suspect it was the same for me. I'm 38 (almost 39) and I'm a bit 'cuddly', so that didn't go in my favour statistically either.

I'm pleased the midwife was lovely about your morning sickness. You need looking after a bit now. Try to keep normality until your amnio - I suspect your lovely little daughter will help you with that! :-)

I felt (and still do a bit) like my eyes had sprung a leak during my tough time...crying is fine, and releases some of that tension you will be feeling. So go ahead and boo it out guilt free!

We'll all be thinking of you (all of us from the anxious over message from specialist midwife thread anyway!)

Look after yourself, and good luck for 6th March x

[PoppyS34]

I'm really pleased they were able to explain everything and you feel a bit more reassured. I know it's not an easy wait, but I hope the time between now and 6th March goes as quickly and as stress free as possible.

[mamababa]

Hi Wasn't your amino today? Hope it was ok

[pipoca]

I was 36 yo and had HG in my second pg. Normal nuchal results but a 1 in 68 risk for Downs based on the bloods. I had a low PAPP A and a high Hcg reading, which put me in the high risk category. I was told the high HcG (the pg hormone) was possibly linked to the HG. I had an amnio and all was fine. DD is now nearly 10 months.

[vanimal]

Hi mamababa, it was today, thanks for remembering, that's really lovely of you :)

The amnio went fine, I had been anxious about it, but not too scared over the past few days, and then today I was terrified!

The radiographer was lovely, he was really polite and gave DH and me both lots of opportunities to ask questions. He did quite a lengthy scan, measured arms and legs, skull, lots of brain measurements, and heart measurements too. Baby had its hands in front of the face, so that was the only part he didn't check, but said everything looked fine, and within normal measurements. We were especially relieved that heart and brain measurements were all fine, given that DS babies often have heart or developmental problems.

The amnio itself was pretty quick, again, he really explained well as he went along. It was a bit of a shock having the needle go in rather quickly with quite a bit of force, but it wasn't too painful. I was very woozy and shaky afterwards though, fine after some water, and then some lunch at home.

Had a few tummy pains this afternoon, so trying to take it easy now. Unfortunately as DH was with me, he got to work super-late and probably won't be able to leave in time to pick up our DDs (aged 4 and 2) from nursery, so I will be doing that. Will take chocolate to bribe them to sit in their car seats without putting up a fight.

We were told at our counselling appt we would get results by Thursday, but have now been told 3-4 working days, so hopefully we'll hear something back by the weekend.

Much more tired now than I thought I would be, just waiting for DH to get home this evening, and getting into bed.

Hope you ladies are all well too.

[Boggler]

Take care Mamababa, I will have my fingers crossed for you. I have an amnio booked for next week, and I'm terrified just want to get it over. But my risk has come back as 1 in 36 which is down to crap blood results especially low Papp-a! I keep going over the what if scenario and I'm feeling quite low about it all.

[SoozyWoozy]

Glad today went well vanimal - rest as much as you can now, the tiredness surprised me too! Fingers crossed for good news with the results.

[nearlymumofone]

Just wanted to say I'm not in a dissimilar boat. I'm 15 weeks and my results came back 1:153 (nuchal was higher end of normal at 2.9mm not sure about other results). We decided to leave further tests as a what will be will be (although there's not a minute day that goes by that I don't worry, and I wish to fast forward to the 20 weeks scan to know the baby is ok in there.

Really hope your results come back all fine. It's a stressful time for sure. Good luck x

[mamababa]

Good luck to all you ladies remember the odds are massively in your favour

[vanimal]

Boggler it's a really tough time, hang on in there, and it'll all be fine.

Although I was really scared of the procedure there is no real need to be. I did feel crampy yesterday, but today I feel totally back to normal, and am glad I did not book the day off work (I work from home, so I can take it easy and still be working).

Wierdly, now that I have had the amnio I am a lot less stressed about the results, which should hopefully come through tomorrow. I am of course having my moments, but not thinking about it every second of the day as I have been doing.

What day is your amnio next week?

nearlymumofone that's a really brave decision, wishing you the best for your 20 week scan x

[KatieDingus]

I am 19 weeks, 40 and had a screeningresult of 1:101... I couldn't go through with the amnio because even if it came back as saying there was a problem, I don't think I could go through the termination at this stage, I am too attached to my bump! My result gives me a 99% chance of things being OK, I didn't want to risk the amnio either.

[nearlymumofone]

Katie that's pretty much same position as me Katie. When is your 20 week scan?

Vanimal gad all went well. Keeping fingers crossed for you today xx

[bruffin]

I had a 1 in 60 risk from bloods at the age of 34. I had an amnio because I would rather know in advance than worry the rest of the pregnancy, i wouldn't have had a termination at that stage. DD is 14 now and no problems at all.

[vanimal]

Argh, results day is torture!

I can't settle down at all, I am jumping each time the phone rings, even though I know it's only my clients calling me, and I know results won't come through till this afternoon at the earliest, if not tomorrow.

DH is utterly convinced of a good result after our scan, and not remotely worried. I couldn't sleep last night for thinking about the what ifs.

Will update as soon as I hear back from them...

[pixiestix]

Keeping my fingers crossed for you.

[tiggy02]

Hey vanimal thinking of you today. remember your odds are good. I can't believe you've had to wait so long - i think we had our phonecalls about the same time??? I had 1-30 odds and its all worked out ok. Keep busy. xx

[vanimal]

Hiya tiggy,

I am going out of my mind with the waiting! I am thinking of calling them to ask if my results are there yet, is that a bad idea? I am supposed to be working, but have done nothing at all today.

I went for a drive and did a few chores, but have come back home and now just waiting again! I really hope they call today and not tomorrow, I am going crazy with the wait now.

I had 5 days (incl weekend before our counselling appt), and then a further 2 weeks before the amnio, and now 2 days post-amnio, so it's been a very long and stressful 3 weeks. I just need it over and done with now.