Hand holding while waiting for Harmony test results

[Mslad]

Just seeing if anyone out there is waiting for their harmony results? I had my test last Thursday and time seems to have stopped since then. Both my normal scan, and harmony scan seemed perfect, they were very thorough when testing, nt was very low, everything else functioning well, it's my low ppap-a blood test that is putting me at high risk of DS. Some days I feel positive and others I'm overwhelmed with worry. My job involves a lot of independent research/writing work, so I'm well behind on deadlines while I trawl through the internet for some hope.

Anyone else out there going through this agonizing wait?

xxx

Hi Mslad, I had a harmony done yesterday, so have just embarked on the l o n g two week wait. I'm 37 and my adjusted risk came out at 1:122 which is much higher than expected (I had my son when I was 36 and was 1:4000 odd for him). Nuchal was within the normal range but on the slightly higher side (2.5) and the bloods were just the wrong side of the 1 value that they're each meant to be. Freaking out somewhat, but reading the postings on here I realise most women posting were facing much worse odds, and the overwhelming majority were fine.
I almost opted for the CVS just to get a result sooner, but hubby wasn't keen and I think we made the right decision to wait.
When are you expecting your result?
x

Hi girasol, hugs to you, sorry you're going through this too. I'm 33, and got a 1:157 risk, which everyone is telling me is still low, but until good results come back, I can't believe it. my scan seemed really good, nuchal was only 1.3, it's a low papp-a blood test (whatever that is) that has made me high risk.

I think it was the right decision to have the harmony too, but it feels like the longest wait ever. I had the test last Thursday, I was told it would take up to 15 working days, which is still forever away.

you're right, there are so many positive stories out there, and really (I know it's annoying when people tell you that) the odds are on our side. But still, I always thought I was a patient person, but turns out I'm not!
xx

It's funny - as other people have pointed out on the boards - we'd normally regard a risk of less than 1% as being pretty good and nothing really to worry about. But because we're told this is considered 'high risk' by the medical profession it suddenly feels pretty scary - we were whisked off to see a genetic counsellor (I think a specialist midwife) once the doctor had given us the combined test results, and basically got just the same treatment (ie offered CVS as well as harmony) as if our risk had been 1 in 10 or even 1 in 2.

In some ways its obviously good they take it seriously (and the counsellor was very good in explaining the results, our options and generally being quite sympathetic). And we're also very lucky that we could get harmony on the NHS as they're trialing it at our hospital. But when the results are greater than 1:100 I can't help but thinking they could be a bit more reassuring that the likelihood of a DS diagnosis is really very small. I keep telling myself that, but yesterday's experiences left a more illogical part of me feeling the risk is somehow much much higher (it's 'high risk!!' that's what they told us!!).

Hubby has been much more positive about it, but then he's always been an optimist. It's also frustrating as I was hoping to be able to tell people about the pregnancy after yesterday but now I don't feel able to until I'm out of this limbo (though we did agree to tell our parents as we're confident they'll be supportive if the result is not what we're hoping for).

I'm afraid I've always known that I am NOT a patient person...

I completely agree with you about the terminology the medical profession use. If my sonographer had said to me 'your results show just a 1% chance of abnormalities, and there are further tests you can have' would be a lot less scary than 'you are high risk!' The more I think about it, the more annoyed I get.

We didn't see a genetic counsellor, in a way I think that might have frightened me further. DP has gone back into shut down mode a bit (we were both doing that in the first 12 weeks due to recent mmc), he just doesn't want to discuss the pregnancy until the results are back.

I've had to tell a few people recently, just because things were becoming too obvious. I hate that I have to tell people cautiously without the excitement I expected to have. Grr.....!

Seeing the genetic counsellor was double-edged I suppose, but we came up with a few queries overnight and it was great to be able to speak to her the next day about them.

One of our queries related to the fact that the doctor who did the scan had nowhere mentioned the presence/absence of a nasal bone which was something that they definitely checked - and fed into the probability calculation - when we had our son. The counsellor seemed fairly confident this would have been checked and if the doctor said nothing about it it was because it was present, but that the parameters for what they used to calculate risk did change from time to time. Do you know if they used that as a factor in your calculation?

I'd rather shut down a bit until we get the results (we had an almost-mmc before our son - I actually miscarried the day before our 12 wk scan). I was also hospitalised for 5 days with a PV bleed when 27 weeks pregnant with my son, though thankfully he was fine.

DH's approach has been somewhat contradictory (although always trying to be positive). On the one hand he says it's a marathon and all you can do is take it one step at a time, which is waht I'm doing, thinking only about getting the results of the test. But on the other hand he says (effectively!) there are lots of things that can go wrong with the pregnancy so there's no point dwelling on this! I think he means that while there is always something to worry about, most of the time everything works out fine so you should try not to worry too much about anything - but that's not really how it's coming across!

I fluctuate between being quite positive and quite negative about it all. My new concern (and I'm hoping I'm not setting hares running here) is that I wait for 2 weeks only to be told that it's an inconclusive/non-result and the wait has all been for nothing.

The counsellor said that if we decide we want an amnio for whatever reason once we have had the results come back then they'll move heaven and earth to get me seen quickly and within a day or two at most, but then it's still 3 (working?) days to get the results of that.

Also waiting for harmony test which was offered at the nhs hospital as a research project. I am considered 'low' risk at 1 in 520 (although I am an older mother). Yes, the high/low risk is a poor way of quantifying things and would be much more reassuring to be given a percentage instead. I also wish that there wasn't such an emphasise on termination, particularly when waits for amnio/test results seem quite long. If women do want to terminate the pregnancy, it will probably be around week 16/17 which feels very late in the circumstances.

Just hoping for healthy babies for all of us.

Hi mamaslatts, sorry to hear you're in a similar situation. I agree the NHS system seems to come from the point of view that a) of course you would want to get all the tests for Downs and b) of course you would want an abortion if the results come back as positive for Downs. Which is surprising really, given the advances in healthcare for people born with Downs. I can see why it evokes such a strong reaction from disability rights groups, and parents of children with Downs.

I think the stats are that 94% of people who get a positive test for Downs have a termination, but it must become a self-fulfilling prophecy, eg people end up doing that because it's presented as 'the norm' by the healthcare system.

That said, I'm in little doubt that I would have a termination if the results aren't what we're hoping for. I'm also concerned that I'll be around 16/17 weeks by then and haven't dared look into what this would mean in practical terms (I think I'd rather never know, though you can't be completely head in the sand about it).

I also wonder why they've chosen 1:1000 as the risk cutoff for the Harmony research project - this is a tiny, tiny risk of Downs (even 1:520 is only a 0.002% risk as you've probably worked out). I guess its good that women are given a choice but it does seem like a very high (low?) threshold.

Are you at Kings/UCLH (if you don't mind me asking)? These are the 2 hospitals I know of doing Harmony trials but there may be others. When did they say you could expect your results?

I didn't realise the stats were so high for downs terminations. I'm guessing most of these might be from amnio results which is more likely to be taken by women who feel they would have a termination as its more invasive. Honestly don't know what I would do at this point in time, I guess we all hope for a 'reassurance' result. I also think although many in the medical professions suggest termination, I would feel very uneasy about discussing this with anyone other than very close friends as I would feel judged. I suspect there would be a lot of breezy 'DS is really not so bad now!' and the like.

Yes, I am considered 'low risk' by my score but guess for research purposes they need as large a sample as possible - I wasn't offered an amnio which is considered the only 'diagonostic' at the moment. As far as I understood from my discussion with the midwife, very rarely the harmony test can produce a 'false positive' so i guess they would offer all women with a positive harmony result an amnio if they wished to have a termination.

i have been told results wait is 7-10 working days and i'll pm my hospital to you.

Hi Mamaslatts, I'm also sorry to hear you're in this waiting game. This is such a whole new world of stats and information that I was completely unaware of. I'm living in the Netherlands, and when I first said I wasn't sure about getting the combined test, only because I'd never heard of it, I got a real sense that they thought I was insane, and was then given a talk about the difficulties of a child with DS. I still don't really know how I feel, and like what you said mama I think I assumed I'd get a reassurance result.

Hope you both have a distracting weekend ahead!

girasol meant to say, the results coming back inconclusive is almost my biggest fear! I know thats irrational, as a bad result would ultimately be worse, but the thought of going through all this again........I think my head would explode. I had also really wanted to avoid an amnio if possible.

I don't think they took the nasel bone into account on the first scan, just the bloods and nt level, but the harmony scan definitely checked for it. I didn't get recalculated odds based on the detailed scan, but I'm assuming it has to be better.

Your Dh is right on both accounts, we can only take one step at a time, and there will be things to worry about all through the pregnancy, but it doesn't really make me feel much better right now.

A big glass of wine would help though.....

That's a good point, Mamaslatts, about the stats for terminations - there must be a number of people who would either never consider abortion and/or are quite open to having a child with Down's Syndrome so don't go through the screening/testing. I have a colleague who decided to have an amnio which tested positive for Down's and she went on to have the baby - I think she just wanted to know either way so she had certainty and could be prepared.

I met some friends from my antenatal group today (from when I had my son) and told them, because they have generally been amazingly supportive and non-judgmental, but I don't plan to tell anyone else. I don't know what friends reactions would be but I'm sure some would be uneasy to say the least and I couldn't blame them if they were judgmental. It just doesn't seem to be something that people openly discuss - despite the 94% statistic it still seems very taboo.

That makes sense about wanting a large sample for statistical purposes - I guess they need to ensure the sample has people in who are really very low risk as well as high risk to check that the test works as it should.

I think the harmony comes back with a false positive in 2% of cases (although that's across all 3 trisomies - apparently for the Down's gene it's even lower than that, ie it's nearer 99% accurate for Downs), so they'd always suggest having an invasive test to confirm it. The genetic counsellor wasn't aware of it coming back with any false negatives, but I think I read in an initial study of 1000 odd women (conducted by the Fetal Medicine Centre) they did have one false negative.

Mslad, I'm surprised you got a talk about the difficulties of life with a DS child - that seems verging on the inappropriate, or at least inappropriate if they don't present a more balanced view (not all DS children have severe disabilities, lots live happy and relatively fulfilling lives etc).

Thankfully (!) we're moving house next week, so we have a very busy time ahead. Just as well....

Hi, I didn't have the Harmony test but I had the NIFTY which is virtually the same thing. It was done on 5th Nov and I'm expecting the results tomorrow.
My NT measurement was 1.4 which was fine but my PAPP was low at .44 and HCG high at 2.02 but I had IVF and this can affect the bloods. My initial NHS odds were 1 in 29 then the nifty test increased this to 1 in 80 as the nasal bone was present at the scan.
We have already decided to terminate if it comes back positive for any of the trisomies, after an amnio to confirm of course. I'm sorry if others think I'm awful saying that but I couldn't cope with a disabled child when I already have a child to consider. I would have to give up work as there's no childcare round here for disabled children so we would all suffer financially as well as all the other problems.
I hope your waits are going as well as can be expected. This has really been the worst two weeks of my life.

Hi ladies

I'm waiting for my harmony test results too test was done on the 13th so a long wait yet after a raised nuchal fold measurement.. A nasal bone was present and heart was all fine.. Odds are 1/89 of downs ( other trisomy's ruled out) Im absolutely terrified... I have one dd who is 5 and had no worries with her I'm in a state of limbo at the moment and it's awful.. I'm praying everyone gets a good result from the test but I can't seem to picture it for myself just keep imaging the call and hearing the worst news, I'm slowly losing the plot.

Hi Turquoisetamborine, I'm glad to hear the wait is nearly over for you, we can all empathise with how difficult it's been. And all the more so after the rigmarole and stress of IVF.

The question of what to do with a positive result is clearly quite emotive - obviously some people believe a termination can be justified in no circumstances but only you can decide what is right for you and your family, and I'd hope you wouldn't find anyone passing judgment on here.

Apparently one of the worst things in such a situation is where one of the couple wants to keep the baby and the other wants to terminate. While noone would suggest it's an easy thing to do it sounds like you're both agreed so at least you can support each other.

DH and I have not discussed it any detail (because obviously we're hoping it's a bridge we'll never have to cross) but I feel quite strongly that a termination would be the right thing for us to, and I think DH agrees.

Let us know how you get on - we'd obviously understand you'll have other things on your mind if the results aren't good, but objectively your odds are still very good so I'm sure you'll be fine.
Will be thinking of you. x

Hello Chookford - limbo is the word! :-( It's awful not even feeling able to tell people, let alone knowing whether we'll have another baby in 6 months' time or whether we'll be back to square one and maybe never manage to have more children.

I'm sure the odds are calculated using masses of statistical information but on the receiving end it just feels like they are pulling numbers out of the air. At the end of the day, either your baby has one of the trisomies or it doesn't, so in a way it doesn't matter whether your odds were 1:1000 or 1:2.

I'm trying to take it a day at a time in terms of the waiting, but it's obviously easier said than done. Our odds are both around the 1% mark which it's worth repeating to yourself are tiny. If someone told me, eg, I had a 1% chance of developing cancer or alzheimers I'd think "Well that's something I can cross off my list of things to worry about!". But as I've said before, there's something about going through this whole testing and waiting process which leaves you with the (arguably irrational) feeling that the odds are much worse than what you've been told.

Do try to picture yourself getting the call and being given the all clear! Even if you don't really believe it, I'm sure if you force yourself to do it it will make you feel a bit less negative.

girasol thank you, that post has made me feel a glimmer of hope.. I know I need to try to keep a positive attitude but it's so hard!

turquoise I hope tomorrow brings you good news will keep everything crossed for you. X

Chookford I keep playing how the call will go too! It normally begins ''Unfortunately...'

My results could be Tuesday or tomorrow. I'm actually hoping for Tuesday as I won't be at work but I'll be at work tomorrow. I'll probably just have to leave if the results are bad.

turquoise that's exactly how my phone call starts too I can't imagine any other outcome at the moment, I can feel the baby moving now which is so upsetting as I'm distancing myself from it now just incase.. I also have the fear of a call at work but as you say it would just be a case of leaving straight away. I really hope you have your good news soon x

Good luck everyone expecting results this week!

I took the weekend off mn, as I had been driving myself crazy looking for any piece of new information about these results. I think my results could come back this Thursday or Friday, but it's probably more likely to be next week. I'm also trying to remind myself that I think 'no news is good news' in this situation.

Worryingly I am imagining the phone call going well, but that probably means I'm setting myself up for a fall, I'm trying to dampen my expectations and assume the worst.

Girasol, dp and I are similar to you, we haven't discussed it in great detail, but I know we both feel a termination would probably be for the best. I don't feel like I could tell anyone this in rl as we would face too much judgement. I wonder how many people go through this and never tell anyone in rl?

Mslad, glad you had some time off worrying over the weekend. I don't think it is that common to go through this as most announce their pregnancy at 12 weeks and I've only known once friend who lost her baby at 7 months due to pre eclampsia.
I work with young women so have seen many, many pregnancies and it's rare to even hear of a miscarriage never mind a late one.
I don't care if people judge me on my views that I would terminate if positive. No one can say what they would do unless they've been in this awful situation.
When I've read my paperwork from the nifty test it says results are usually received 12 days after the sample was dispatched. That would have been 6th Nov so results tomorrow.
I hope we all have happy endings to this by the end of the week.

I just got my call saying my results have come back lowest risk for all trisomies, Downs, Edwards, turners etc etc so I'm thrilled! I'm also having a little boy!!

I really hope the next few days go quickly for you and it all turns out well.

Oh turquoise that's fabulous am so happy for you, many many congrats

YAAAAAAAAAY Turquioise! I am so so happy for you! What a relief -I can imagine you are so thrilled and exhausted! Now you can enjoy your pregnancy xxxxx

Turquoise! So pleased for you! Time to enjoy your pregnancy and start thinking of names for your little boy. xx
(I have 2 little boys, they are fab!)

Thanks girls! Yes thrilled and exhausted sums it up. Haven't had a proper nights sleep in two weeks.

I'm praying for the same result for you two. xx