Anyone else waiting for Iona/NIPT results ?

[Difficulttimes17]

I had a combined blood test at my 12 week scan a week last tuesday and they called on tuesday this week to say i was high risk for edwards syndrom. My hormone level is low at 0.30 and my PAPP A result is low at 0.30..my NT result is normal they said at 1.27. I dont know what to do with myself ive had 3 miscarriages before this pregnancy and now worried sick its all going wrong again. The risk level they gave me was 1 in 93 and everyone around me keeps saying 'well thats okay dont worry' but they havent had all the issues ibe had trying to concieve and how unlucky we have been up to now. I just feel sick. Did Nipt test on tuesday and tried to go to work wednesday and yesterday but kept gettinf upset i didnt even know what edwards was up tp tuesday this week and now i cant stop worrying about it. They keep sayig the scans look fine but i dont know what to believe now. Is anyone else crawling the walls or gone through this before ? I hate waiting but im also dreading answering the phone when they call back..i dont knwow hat to do with myself. Any advice would be appreciated. Xxx

Hi @Difficulttimes17 I'm not sure if I'm the right person to respond but wanted to say something supportive.

Waiting for my Harmony results was one of the hardest things I have experienced in this whole process (including 2 rounds of IVF, chemical pregnancy etc). It is the most awfully anxious time. There's nothing anyone could say to make me feel better because I was so concerned regardless of stats etc

Luckily we got our results yesterday and all is well.

I'm not sure I did stay sane. One thing that helped me a bit was that I made a detailed plan of everything I was going to do if the test came back positive for an issue - I felt better knowing it was all planned out.

I also avoided reading anything online from people that felt judgmental about what decision I might make.

Of course that wouldn't work for everyone. Some people believe in staying positive but that doesn't work for me really.

I did however give myself permission to imagine a good result as well as a bad one.
I reminded myself that imagining a good outcome wouldn't change the result any more than imagining a bad one.

Other than that distraction distraction distraction. Friends who don't know. TV that you like.

Good luck with it and I hope the time flies. And sending lots of good thoughts

X

Thank you JaneFx40 it helps alot to hear im not the only one anxious and stressed over this. Although i have told people around me to get that added support it hasnt changed how bad i feel about the whole thing. Im so glad to hear your results came back okay it also helps to hear good news stories right now. Its a good idea to mke a plan..I know this is quite personal so understand if you dont want to say.. if it was bad news what had you decided to do, were you going to go ahead or terminate ? I cant believe after our miscarriages and the pain of that we may be left to make such a horrible choice i cant get my head round it. Si hope we hear early next week and praying on praying for good news xxx

@Difficulttimes17 that was a tricky one. If we were positive for Turner's or Edwards I was more likely to terminate (although I wanted to do more research first). I suppose for me, the baby has already had some life inside me, without pain or discomfort and I'd have been devastated but thought maybe I was doing the best for my baby. It's a tough one. I think you could only really decide once the true result was staring you in the face. I think if it happens, your instinct will tell you what to do.

I am also 41 years old so was factoring that in also both in terms of my own age, age of my support network (parents etc) and also my ability to have another baby.

The plan I made was less about having pre decided and more about steps I would take.

1. Ring DP
2. Ring midwives
3. Book in amnio etc

That type of thing. So that if it happened I had some clear actions to take. Mostly I wanted to get complete information as soon as possible.

Try to believe as well that your baby may not have it. Allow yourself that relief too.

Fingers crossed for you.

Xxx

Yes i get you. Thanks jane. Yeah im 38 and we have been trying for a baby for last 5 years tgat have resulted in 3 miscarriages. Think thats what makes it all the more devastating. Okay yeah i understand the plan steps i think that would help as in this situation i crumbled on tuesday when we got the call with first set of results just went into panic mode. It would help to have a plan to focus on. I agree its such a hard decision and i may be thinking too far ahead i didnt picture myself in that place . Your right i will give myself some posirtive relief as well. Thank you for the advice

Hi janefx40 thanks again for taking the time to post. Ive had the IONA results back and all is okay. They have come back at a million to one for everything, downs syndrome, hormone, etc so happy..

Wow!!! Oh I'm so pleased. It's the most awful wait but the best feeling ever when things are ok.

You really deserve this healthy pregnancy - hopefully you can start to believe things may actually be ok.

When is your due date?

Xxx

@janetxf40

How long did it take for your harmony results?
I had my test done last Tuesday and I've not heard anything yet.

@Janefx40

Sorry got your username wrong!

Hi Janefx40 my due date is christmas day!!! So best present ever! @whathappenednext sorry to hear your still waiting. I had my Iona test done same day last tuesday at leeds general infirmary (i think its the same thing as harmony) i got my results monday. Leeds gave me a number to ring if i had any concerns or questions.. obvious question but did you get given one ? Xx

@Difficulttimes17 ah how lovely to have a Christmas baby!!!

@Whathappenednext mine took exactly a week. I had the scan at 7:30pm on a Thursday and he called me at 8:30pm the following week. I did email the Dr to ask if there was any news. Mine was a private clinic locally. I don't think it means anything if it takes longer but it is an agonising wait. Good luck x

I've just heard back and they say there's not enough dna to detect a reading so I have to go back for another blood test next Tuesday when I'll be 12+4.

I'm worried now :(

@Whathappenednext that doesn't mean anything is wrong. It just happens sometimes but obviously awful for you to have to keep waiting all that time. I think the Harmony wait was the most stressful bit of all.

Fingers crossed all will be well xx

@whathappenednext really feel for you, i was so anxious and on edge during my wait but having to go through this twice must be horrid. They did mention to us that they sometimes have to retest due to the same reasons they gave you, I don't think it means anythings wrong necessarily. Iam crossing everything that all will be okay with your results too, I was very up and down during my wait sometimes very teary, or very stressed and the next positive that all would be alright.. all over the place basically! The thing that helped was doing things for me that i enjoyed to take my mind off it.. (i know thats not easy but if you can it helps) also just generally keeping busy even if thats cleaning the house top to bottom anything not to think about that for a few hours. Try and give yourself the time to think about other things it does help you to get through it. Sending lots of love and wishing the time to go as fast as possible for you.. xxxx

Thank you both of you.

It is a worrying time especially as we've waited so many years for this linger for pregnancy.
I'm a worrier by nature which doesn't help anyway! DH keeps saying 'everything will be ok' and I know he's only trying to reassure me but none of us will know that until we get the results.

I have my 12 week scan today and was hoping to have my results by now so I didn't have to go through the nhs combined test but Looks like I'll have to have that one today too just in case. Hopefully my scan will make me feel more positive.

@Whathappenednext oh good luck today. The scan may be reassuring. I had mine yesterday. I had chosen not to do bloods as I had my Harmony results already but she measures the nuchal translucency and nasal bone anyway so you may get some reassurance from that.

Mine is an IVF pregnancy so I understand how anxious having struggled to conceive makes you. Sometimes it is hard to believe it could actually be ok.

I know there are no words of comfort but try to enjoy seeing your little one today.

I have everything crossed that things will be ok for you x

Mine is an ivf pregnancy too @Janefx40 ❤️

Just on our way now, so nervous!!!! X

Good luck today at the scan.. theres nothing anyone can say to make you feel 100% okay but I just had to keep telling myself genuine problems are so rare and theres far more babies born healthy and happy then ones with issues. I had 3 recurrent miscarriages and one of those was a missed miscarriage.. i think its totally normal when TC has been a challenge to have concerns. Try to think positivly that all will be okay and a lot of these tests are precautionary and there isnt actually anything wrong xx massive good luck let us know how its gone xxx

Just got home, all is looking good!!
Im 12 weeks but baby is measuring 11+5 but the said that's perfectly normal.
NT measurement was 1.8 and they said that's nothing to worry about so I do feel massively relieved!!

Phew, now what to worry about next??!!? 😀 x

Yay!!! So pleased it went well. It's pretty magic that scan isn't it!! So that is a big relief. Enjoy looking at your pics!!

Great news xxxx 😁😁😁

@Whathappenednext I was just checking out another thread and realised it was you on there too! Have you stopped your meds now?

I stopped estrogen yesterday and have been laid up in bed all day today with severe nausea and vomiting (only been very mild rest of pregnancy). How are you feeling?

I was meant to stop yesterday but because I'm measuring 11+5 I've decided to take progesterone for 2 more days. I know it probably won't make a jot of difference but it just makes me feel a little more confident about things!
I've not taken anymore Progynova though so being brave with that one.

My nausea was at it's worse between week 6-11 but this past week it's been much better. Not totally gone and evenings are worst. I haven't got my appetite back yet though.

Do you think the estrogen has anything to do with how rubbish you feel? Maybe just a coincidence? Hopefully it will pass very soon, nothing worse than feeling ill!