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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Downs Syndrome TEST

13 replies

Dutchmum1980 · 04/11/2021 19:21

Hi all. I'm 41 and expecting my 2nd baby (via IVF). I'm currently 14 weeks. All my scans have been normal. NT measuring normal. No abnormalities seen.
I got my screening results back today and to say I'm shocked is an understatement. My risk for Edwards and Patau is low but my risk for Downs syndrome is 1/28. Based upon my age, HCG level of 3.3. When I asked about how the risk is calculated she explained that the screening is a computer software generated result taking in a woman's age, BMI (I'm normal for my height but have put on 2kgs so far and I'm only 5 foot 2) and various other factors.
I'm wondering if because I had OHSS during the start of my pregnancy and I used a trigger HCG shot before my egg collection that this has screwed my HCG levels up??? I still have swelling in my ovaries apparently.
I'm booked in for a NICT blood test tomorrow but my husband is out of his mind with worry....which is having a huge affect on me. (He wants to terminate the Pregnancy if it is confirmed DS).
Also does an IVF baby increase your risk in this 'screening software' as I was asked lots of questions about my treatment during the screening test booking.
Thank you xxxx

OP posts:
Pinkywoo · 04/11/2021 19:30

I'm also 41 (and 5'2!) my quad test came back at 1-4 for Downs. I was offered either NIPT or an amnio, went for the amnio as it's more accurate and quicker, and it came back clear, no abnormalities. It was bloody stressful though and did make me a bit cross that I only went through all that because this test puts so much emphasis on age.

Dutchmum1980 · 04/11/2021 19:47

Yeah I believe my IVF treatment is a factor too but obviously worried that my HCG level is high....but left wondering if it's the reminentsnof my OHSS

OP posts:
Clementineapples · 04/11/2021 19:50

Hi op, I had my screening not long ago and it’s also based on babies measurements. I’m not sure how accurate the testing is but you will worry until you know for sure. Remember 1/28 means there’s a good chance baby will be absolutely fine as well. Good luck Flowers

OM82 · 04/11/2021 20:01

Hi @dutchmum1980, sorry to hear you're going through this. I've been in the same situation as you recently. For us the NIPT showed very low risk which was enough to put our minds at rest. I found the thread I've linked to below helped me quite a lot to know there's a lot of people with the same situation.

The wait for the next stage of results is awful so be kind to yourself and hide away from the world if you want to (I learnt that after bursting into tears after someone - who had no idea I was even pregnant - innocently asked me how I was).

www.mumsnet.com/Talk/antenatal_tests_choices/1384335-High-risk-screening-Normal-NT-but-high-hCG-Low-PAPP-A

lawandgin · 04/11/2021 20:08

Age, weight, and ivf can all skew screening results. I have a higher risk score than I expected, despite being 34 and normal weight with a low nuchal measurement. However it is an IVF pregnancy and I do have slightly low pappa a. OP you do have high HCG. However, it is way more likely than not that baby is fine. It's really hard so I won't tell you to relax, but I hope everything goes well for you.

Dutchmum1980 · 04/11/2021 21:42

I did realise that when I had my initial pregnancy results from the IVF clinic, they said my HCG levels were high.

OP posts:
Em39ma · 04/11/2021 22:24

My results came back 1-25 for Down syndrome, not an ivf pregnancy but I’m 42.
Had the nipt and came back very low chance. They think my result is down to being a twin pregnancy where only one developed, at an early scan there were 2 sacks seen, but only one with a heartbeat.
How many embryos did you have put in? As like mine one that didn’t develop may be the one that had the problem.

Geluksvogel · 04/11/2021 23:34

Two IVF pregnancies but went straight for NIPT at 10 weeks on both. Dr in the family recommended as the Combined test is both unreliable and stressful. Age is a key factor when they calculate it so you will be high before you even start. Good luck.

IsabelHerna · 10/11/2021 21:37

Hello ladies! I just turned 40 and starting IVF, how can you calculate it?

I thought there was a test than they do before transferring the embryo, did I understand this wrong? Sorry for possibly overreacting but I just found this thread and got worried.

Dutchmum1980 · 11/11/2021 07:36

It's basically a computer generated risk factor done at the screening bloods at 12 weeks approx.
I think you're asking about genetic counselling on your embryos, which we didn't have as our round was NHS funded. Our embryo was just graded as a 1.1, so highest quality. Hope that answers it
I've still not had any results back but may chase them up today. The wait to hear about the NIPT is pergatory.

OP posts:
Bryzoan · 11/11/2021 07:58

Hi - I am so sorry that you must be having an incredibly stressful time. I did just want to say though that while having a child with disabilities can be tough, it can also be hugely rewarding. Our daughter has a genetic disability not dissimilar to Downs Syndrome and honestly she lights up our lives. We also have a good few friends with Downs, some of whom are the most lovely people to be around. Very good luck with your test and what must be some very difficult thinking for you.

Dutchmum1980 · 11/11/2021 19:37

My specialist midwife just rang (she'd stayed after hours to keep checking for me). Low risk and no further investigation. To say I'm relieved is an understatement. Never felt a relief like it.

OP posts:
Pinkywoo · 12/11/2021 11:06

Brilliant news OP!

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