Awaiting NIPT results

[Sunflower1492]

I had a NIPT blood test today after I received a 1 in 63 chance of baby having DS.
My results for the initial combined blood tests were:

HCG 197ml
PAPP-A 2368 L
NT 2.1 mm

I'm 28, this is our first pregnancy, no risk in terms of my physical health.

Don't know how to feel or what the initial results actually mean?! Has anyone been through a similar situation and have positive stories to share? NIPT results are due back Wednesday/Thursday. Praying for happy news.

@JennyMY the current system is terrible. You should never be waiting three weeks?! I know you didn't want to opt for the amnio but I have read really positive things about this procedure. Find out which consultant will be undertaking it and how experienced they are. Thinking of you. Keep us posted xx

They wouldn't give me a straight answer, the clinic seem to have been a bit vague. I think it was because there wasn't enough foetal DNA but it can be for a variety of reasons. My BMI is normal so it isn't that, but my consultant didn't seem to have much faith they'd be 100% successful on redraw and because I'm already 16 weeks she thinks we need to do the amnio now or I'll have to wait til much much later on. So have an amnio booked in on Thursday - really unhappy about that as we wanted to avoid invasive esp as they have to do both twins - but not having any answers week after week is awful. I hope you don't get messed around like this! Xx

@Sunflower1492 Yes I know, I can't understand why they didnt ask for redraw straight away when it failed last week! As they'd already gone over their '10 working days' anyway. My partner is livid that they don't warn you of the chances of this happening. You hear yourself up for a negative or positive result but not a 'no result'! Thanks for your support, will keep you posted, sending positive vibes to you as well x

@JennyMY this sounds horrific. Are you at an ivf clinic?xx

@Sussexbysea No, I'm being seen by the specialist consultant at the hospital a few towns over because it's twins and due to recurrent miscarriage. But my scans are mainly happening at my local hospital and the testing clinic is in Oxford. The communication between the three is not great!

Having to have an NIPT redraw with twins is pretty common unfortunately as clinics won't report below 5% fetal dna or sometimes 8%

@ivfbeenbusy Yes she said being twins could have contributed. She said if I wasn't 'high risk' she'd have just recommended redraw and seen what happened but because Twin B came back from combined screening increased risk we don't have the luxury of time to wait potentially another 17 days for a result or it wouldn't be safe to do procedures without risking other twin until 30 odd weeks! X

@Sunflower1492 fingers crossed you get your results tomorrow. Lots of love xx

@Sussexbysea thank you so much. I’m praying we do get them tomorrow and that it’s good news. I’ll let you know. Thinking of you too. Did you phone arc? Xx

@Sunflower1492 I didn’t. It seems it’s more for those who have received the news and then made a decision to end the pregnancy.

Hey @Sunflower1492 I’ve been thinking of you today. How are you feeling?xx

@Sussexbysea thank you so much for your message. It has been an extremely long day but I spoke got them at quarter 5 and they said NIPT came back low risk for all three trisomies. Absolutely over the moon and so relieved.

I'm hoping your results will be back for you soon and I'll be thinking of you and praying for you. I'll stay on this thread to stay in touch xx

@Sunflower1492 this is amazing news. I’m soooo happy for you.xxx

@Sussexbysea thank you!! When have they said your results are due back? How are you xxx

They probably won’t be back till Monday or Tuesday at the very earliest. Is it true they are sent to America for testing? Also, can they tell you whether it’s a girl or a boy from the test?

I’m ok actually, when I’m asleep I dream about it which gives me a disturbed sleep.xx

In Wales when they’re done through the NHS they go to a local lab which is why the turn around is quite fast. But if I had gone private it would have been sent overseas and I believe it is a lab in America. Our health board don’t disclose the sex. The only information they give us is if the risk came back high or low, they don’t even give figures. I have read that some health boards will tell you the sex if you ask.

I asked the midwife advice about whether I should still have an amnio and she said no as the test came back low risk they don’t advise it.

Glad you’re okay. It’s such a horrendous time my thoughts are with you. Hang in there xxx

@Sunflower1492 that’s so frustrating they won’t tell you the stats. As the parents, you’d like to be able to make your own judgement on what to do next etc. Obviously your midwife knows best but it’d be nice to know.

I’m praying that my results are here for Monday, I just want to know whats next. Baby is a little wriggler so it’s be nice to either disconnect from it all or start buying clothes 💗

@Sussexbysea I know! I'm trying not to focus on what the stats might or might not be as I think I could worry myself sick.

How are you today? Xx

@Sunflower1492 I heard a song this morning which set me off so that’s me not being able to watch greatest showman for a while.

We went for pizza and shopping this afternoon, primark have so many lovely baby clothes. I just wish I knew if I could buy them or not xx

Hiya,

I’m a 37 and 51 week year old, experiencing my first pregnancy. I have a bmi of 42 and an underactive thyroid. I had my 12 week scan at the start of this week which was absolute wonderful to see our baby for the first time.

Nuchal measurements came in at 1.8mm and then I had bloods taken for a combined screening test.

The midwife rang me today to say I was classed as high risk with a 1/21 chance of downs. My PAP-A came back as a low reading too of 0.24. The whole conversation went by in a blur as I was felt really overwhelmed.

I have been very upset since getting in from work and my partner has now booked an NIPT scan for this Sat. I’m so Unbelievably worried / sad after today and the thought of an invasive diagnostic following an NIPT is causing nothing but anxiety.

Anyone gone through a similar experience? Any guidance or advice?

Thank you, Livvy xx

@Sunflower1492 so pleased for you. Xx

@OMC2209 hello lovely. So sorry you’re in this situation. It’s horrible. Your nuchal measurement is great and reassuring. Your age and BMI will have increased your risk - please remember these nhs tests aren’t diagnostic they are literally numbers from a machine based on many factors and are really inaccurate. Also, one in 21 is 95% chance things are ok. It’s so hard waiting but the NIPT is great on the whole. Contact ARC if you need someone to talk to. Xx

@Amanduh thank you for such kind words. Yup I’m trying to focus on the 95% outcome and keep calm. It’s such a blurry place to be in 😑

@OMC2209 I’m sorry you’re going through this.

I’m currently waiting for my NIPT results too. The NIPT is a blood test not a scan and can be 7 to 10 days to get the results. If the results are ok, then you won’t require an invasive test.

Let us know how you get on

@Sussexbysea not to much longer for you now, hang in there. The longest wait is over. You’ve been so strong, I honestly feel this is the stressful experience I’ve ever been through. Hope you’ve got good support at home. Do you have a busy weekend? Thinking of you xxx

@OMC2209 sorry to hear you are going through this too! It’s absolutely horrendous. Try and think that you know nothing until the NIPT is back, the initial blood tests are so variable and inconsistent. I hope you’re okay and get positive results. Sending you best wishes xxx