Not enough fetal DNA NIPT/Harmony

[lookingforsomehelp]

Hello everyone,
Looking for some positive stories as feeling very down and upset at the moment.
With my first pregnancy (my DS healthy 2 yr old) I was given a high chance of abnormalities 1:100 so had the NIPT which then came back as low result and as I said he's a healthy 2 yr old.
So this time round I thought I'd pay for the Harmony first to check on issues as I was so stressed out last time. Had scan and test last week when over 10 weeks. Scan all ok and just heard from clinic that there wasn't enough fetal DNA to give result so I need to go in for a re-test. I then look up on google (worst thing to do) and find out that only 65% of people who need a re-test actually get a result and also there's a high chance of a genetic issue! It's not a twin pregnancy, IVF or I'm especially heavy so these risk factors are out.
Can anyone please give me any hope, I am distraught and don't know where to turn. Has anyone had this result and gone into get a re-test which came back as low risk? Just don't know what to do for the best now! I am 12 weeks on Monday and NHS scan isn't for 1 1/2 weeks.
Feeling very low 😔

Someone please give me some hope
It all feels like it is all over already 😔

I'd have the other test. It will hive you the confirmation you need. Go with the clinic suggestion rather than dr Google. I had 4 vials of blood for a panorama, if scan shows baby is growing probably just a bad sample or fluke test (every test has error). I'd do the test.

Thank you for your response @GlamGiraffe, I haven't heard of the panorama before. They took two vials of blood, same as when I last had it.
I will go for the re-test, has anyone any positive stories of the re-test?
Hard to stay positive, especially in the current climate, feel devastated

I had harmony with my first - not enough dna first time round. Had it redone and got a low risk result. Second time round I waited an extra week and got a result first time.

I was actually told not to have harmony pre 12.5 weeks as results could come back that way. The reason I had panorama was because it gave results from 9weeks. My dr advised it gave a better result with smaller levels.

Thank you both @GlamGiraffe & @welshweasel, both are really helpful.
I am so worried about it and just wish I could get the result now.
With both my pregnancies I've had this
Worry now and it's really really hard. On top of all the virus situation and the worry of being pregnant and going to re-test (where I might catch something). All very hard.
Thank you for your positive messages.,..I wish I had known about the panorama before.
@welshweasel did they tell you any % about how many get a good result after a re-test at all?

Yes they said almost everyone gets a result second time

Thank you @welshweasel.
Did they say at all about how many then get a good result?
Really helpful, thank you x

I've had the Harmony test twice, and my doctor told me not to have it before 12 weeks (even though you're supposed to be able to have it from 10) because of this issue. I'm sure it will all be fine and it's just too early. I'm sorry you're finding things so stressful, it's not an easy time to be pregnant is it!

Thank you for your kind reply @AuntVictoria
It really is such a stressful time to be pregnant!
Do you mind me asking please....Did you have the harmony twice for two pregnancies or because you have to be re-tested?
I won't actually be 12 weeks until Monday but they want to reschedule for tomorrow, do you think that will be too soon then?

I didn't have to be retested, I've had it twice with two pregnancies (I'm also pregnant right now ). Both times I was 13 / 14 weeks.

I'm no expert, however the consultant who did my test did say he didn't recommend it before 12 weeks. Maybe phone the clinic you're having it done at and ask for advice from a doctor?

Thank you @AuntVictoria....we'll see how it goes

Hello everyone,
I thought I would update you on the progress.
I went for a re-test for the Harmony when I was 12w3d. The results should have been back by now and I spoke to the clinic and they are delayed. They were delayed last time due to not being able to extract the DNA so I am totally preparing myself for this second time round also.
In the meantime I have had my NHS 12 week scan and the bloods taken (waiting for those to return too). The question I'm really asking is what do I do next? In a lot of what I've read it basically signals something is wrong with the baby if they can't draw the DNA, especially if occurs twice, 10 weeks may have been too soon but at 12w3d it should have been able to report. So do I just sit and wait for the 20 week scan and take the risk? Or think about more invasive testing, that I really don't want to do.
NHS scan was ok, nothing picked up and NT measurement was 1.3
Any ideas at all? This current situation is making all this way more stressful that it should be!
Thank you everyone for reading this lengthy info
X

First of all, hope you are feeling okay otherwise, you sound like your first pregnancy and it’s scare was quite traumatic. That doesn’t mean this time will be the same, so a big hand hold!

There can be a number of reasons for the above, like most things/anything the amount of fractional DNA in blood can vary from person to person and in different weeks. You could have conceived a week later etc etc? The amount of people who go and get tested at 10 weeks and have to go back is quite high!

There could be a number of reasons why your results are taking slightly longer, one of which is the huge amount of stress lots of the labs and technicians are under at the moment. Sit tight! Your NT and scan was really good and that’s for sure something to hold on to.

I have also heard it recommended that if you don’t have enough DNA the first time to come in post 14 weeks... 💐

@Monhysteria thank you for your really kind response, it has really helped
In hindsight I shouldn't of had the rest test until next week when I will be 14w. I feel that the clinic pushed me into the re-test too quickly. I did ask the midwife if it was too early when I was 12w3d and she thought it was definitely late enough.....but apart from your post I've read elsewhere about waiting later and I should of done. Part of me just wanted the results quickly. If it fails again they will not re-test again so I'll just have to go on the NHS tests and hope for the best. In one way it would of been better not to have it at all because then I wouldn't be worrying.
Thank you again for your response....I am trying to forget about it over the weekend and enjoy being with my little one x

I think what you need to do is establish exactly how high the risks are if there is low fetal DNA again. The risk may actually be low e.g. 5% or whatever, and actually sometimes the test just fails and there's not necessarily a reason for it. I would speak to the clinic.

If there is a high risk if there's low DNA both times, speak to your midwife. I was told that if I got a positive I would be referred back to have an amnio on the NHS to confirm this, so perhaps you might be offered similar.

If you weren't, or if you didn't want an amnio, I believe you can have private anomaly scans at 16 weeks but I don't know how accurate these are.

One step at a time - hopefully the result will be clear and even if they can't give you a result, it's not definitely indicative of an issue. If you do get another 'no result', the first thing I would do personally is try and speak to a consultant for some advice.

Thinking of you, fingers crossed all is ok

Thank you so much @AuntVictoria for such a good suggestion, I hadn't even thought about asking that and would no doubt be flustered on the phone and not ask anything as I'm too upset. Also they've been seriously hard to get on phone anyway so I'll def do this when I speak to them.
Thank you for all your kind words x

@lookingforsomehelp I’m in the same boat as test with my third just came back with not enough fetal DNA. I was only 10 days + 2. With my first two pregnancies I was later on and got a result. Have to go for a redraw in two days. Hope everything was ok for you in the end? Can’t find much chat on this and the stats you quoted have made me panic esp as I had results the first two times xx

Hi @Peaches2016

I had the retest at about 14 weeks, and like you I was super stressed about it. The lady that did the retest was totally fabulous and she said that they shouldn't really do the tests so early (can't remember when I had the first one) because it's highly likely that the baby won't be developed enough so some readings will come back inconclusive (like yours and mine).
I had the retest and all was absolutely fine, I now have a totally gorgeous three month old boy 💕💕💕💕
Have the retest, but don't do it too soon. Wait until at least 14 weeks so you don't get another inconclusive result and it'll worry you. As the lady said to me it's actually pretty common to retest!
Best of luck with your pregnancy, try and relax (much easier said than done thou!)
I'm sure it'll all be ok xx

@lookingforsomehelp oh massive congratulations!!! Having a small baby in lockdown sucks but hope you’re coping ok! My ds2 was only just 3m when it all kicked off so it’s been a busy enough year and now no 3 is somewhat of a surprise! Thank you for your reassurance... I KNOW I shouldn’t google 🤦‍♀️🤷🏻‍♀️

just to add i had the Harmony and failed twice and i am not overweight etc. They just said they some people don't have enough fetal DNA so we just relied on the 12wk scan and i have a very energetic and healthy 5 year old now.