Nearly 36 weeks with my first and growth has dropped to 10th percentile - concerned may have undiagnosed Downs Syndrome

[LAURAPAX]

Hi Ladies,

Going out of my mind here for the last few weeks.
Background - been trying for our first baby since 2022 - had two natural conceptions which both ended in miscarriage, went down the IVF route and embryo banking managed to get 5 PTGA tested embryos across 3 egg collections. First transfer failed. Took some time out and had another spontaneous conception last May which has been progressing well and no obvious red flags or massive concerns from anyone.

I went into triage recently due to reduced movements and as I hadn't had a scan since 20 weeks they scanned me and that's where the reduction in growth was highlighted, dropping from 24th% at 20 weeks to just above 10th at 33ish weeks. Consultant put me on a care plan with doppler scans, CTG monitoring and next growth scan scheduled Thursday. However my anxiety has completely spiralled as me and my partner are not short 5'8 and over 6'0 and its made me re-look at all my previous antenatal results which previously I hadn't paid to much attention too as during scans sonographers have said everything looks good etc.

NHS combined risk came back as 1:258 (which I thought wasn't to bad but now reading and comparing to others my age 38 isnt that good) my friends same age came back 1:5000. I had already had the NIPT test privately at exactly 10 weeks which came back 3:10,0000 (low risk) which again I thought was great so wasn't to stressed about the NHS result as NIPT seems to trump the NHS combined screening. However i am now getting concerned I may have false negative on NIPT as everyone on NIPT seems to get 1:10,0000 or less or have high risk.

My 20 week scan was unremarkable but did point to baby being on the lower percentiles. Again I was just so happy we had a great scan with no concerns skipped out without a second thought. It is only now that I've been reading that babies with DS are often smaller and low birth weight / growth restricted that I am really questioning all the previous 'risks and probabilities' and absolutely concerned that I am going to be the 3 in 10,0000 of the NIPT test and I dont think there is anything I can do about it as I'm so far gone.

I dont really know what I am asking for but I just feel so stressed and overwhelmed and stupid for not being more on top of my scan and earlier screening results and feel convinced I am going to get a complete shock at birth. I had no idea that 50% of DS markers are never picked up on scans and there is a fair number of post natal birth diagnoses. I just assumed anything bad would be picked up.

I am driving myself and my partner round the bend and sick with worry. I am over - reacting or is there a genuine cause of caution, although it's too late now to have any options to even consider, this plus being a first time mum after such a long journey is just about the end of me. I have no idea how I am going to cope.

Thanks for reading xx

Stating my bias: I have a child with Down's Syndrome and I think that kids with DS are absolutely brillant!

Having said that when I was pregnant and found out that I was expecting a child with DS I was horrified and couldn't stop crying, so I have a lot of sympathy.

And having said THAT, I really don't think you have anything to worry about! Other than the possibility of reduced growth - which could have 101 possible reasons - you have no other signs. Want to know what my combined testing score with? 1:3. Confirmed by NIPT. Don't forget that growth scans are really inaccurate, I know people told they were having 12lb whoppers who ended up with perfect 7lb bundles and on the other end SIL was scanned 3 times a week for months, induced at 37 weeks when baby 'stopped growing' and told to expect a tiny 3lb scrap - DNeice was a health 6lb (great weight for 37 weeks) and grew like a weed!

So anyway, deep breaths, you are so close now, don't waste the last few weeks of pregnancy panicking about something that is SO unlikely - and something that if it did come to pass would turn out to be a blessing anyway 🥰 Wishing you a peaceful few weeks until you meet your baby.

The above poster has given great advice.

I fully agree with what she said, and I hope you get some reassurance from medical professionals this week.

Whatever happens, you will be fine.

Good luck with the birth and wishing you much happiness.

Oh my love, I’m so sorry you are going through this stress, I really feel for you and know the anxiety spiral well.

I didn’t want to read and run, and just wanted to reiterate what the previous poster to me has said- the growth scans are notoriously extremely inaccurate. I had to have several because they were concerned about my DD size and I got myself worked up beyond belief, especially over her femur measurement, as Dr Google helped me diagnose all sorts of conditions. She turned out to be a bang on average 7.5lbs, utterly perfect. I would imagine that that is very very likely to be what is happening in your case- the odds of DS are still incredibly low.

You have been through a hell of a rough time to get to this point, and I imagine part of this anxiety is your brain trying to protect yourself from any shock bad news. I’m not saying your anxiety isn’t justified at all, and I don’t want to diminish your feelings, but as someone who has done a similar thing many times before, I just wanted to stress that these things more often than not turn out fine.

Best of luck to you OP. And congratulations of course x

Oh my gosh thank you all so much for your kind and level headed advice@DownRightAmazing @Scarydinosaurs @Cali8 I’m so glad I wrote a post as I’ve been trawling the internet for days trying to find stories and I can relate too and I ended up finding more that made me see similarities in my situation which has resulted in me feeling worse. I think I’ve read an every mumsnet and Reddit thread possible. I’m definitely self sabotaging and ruining the last few weeks of pregnancy for my baby, myself and my partner which has overall been a lovely experience up until recently. I’ve just been so thankful to get to here and now I’m worried about what I’ve missed and if there is something wrong. It’s really hard and I’m sure all the trauma from the last few years has not helped as I’ve been on the wrong side of the stats too many times. I just don’t feel very confident and this is definitely a protection mechanism especially trying to come to terms with this possible eventuality before birth but I need to remember that the baby is well, nothing untoward has been picked up from a medical perspective and I appreciate this is a luxury some don’t have.

At 34 weeks baby was only weighing 4.3 so considered small, the Doppler scan was all good so not my placenta failing and our genetics aren’t small which is why I’m struggling to understand why / what could be the reasons for small growth. I really hope I get some reassurance this Thursday. It’s the not knowing that is killing me but I’m also so late in the day. Without banging on I’ve spent this whole fertility journey not knowing how it was going to pan out and it’s really effecting my now again.

@DownRightAmazing I hope my message didn’t come across insensitive, the more I’ve read the more having a child with Down’s syndrome is one of pure joy and I appreciate so much you letting me know that everything will be ok either way, it really helps.

@Cali8 im really glad to hear everything turned out well with your DD. It’s a tough one when you are in it.

I really appreciate the advise and will let you know how Thursday goes xxx

This might sound ridiculous, but baby might just be very squashed up in there. I had all sorts of drama with mine measuring really small, dropping percentiles etc. Finally was induced at 39 weeks because I'd had some reduced movements and they thought my placenta might be starting to fail even though dopplers looked okay. At that point baby was estimated to be 4lbs. I'm 5ft 8, husband 6ft4.

Baby popped out 7lbs 6oz and healthy as a horse, bang on 50th centile for length. But really really curled up. He took a few days to properly unfurl. Midwife said that just happens sometimes.

Said child is now 5 and thriving. Interestingly he's shot up to 90th centile for height.

Growth scans are notoriously unreliable. Please don't let it ruin your pregnancy like it did mine.

I was induced one month early for dd as they said her growth had slowed / stopped and she was under 3lb. They got it totally wrong, she was 5lb at birth and I always think if I'd hung on one more month she would probably have been 6 or 7 lb. She is a perfectly normal size now (on the tall side).

Absolutely not insensitive @LAURAPAX and anyway you are entitled to feel how you feel. When I found out that DD would have Down's Syndrome I couldn't stop crying, completely normal and didn't mean I loved her any less when she arrived!!

@DownRightAmazing i think I’m just in real turmoil currently as no idea how things will turn out and I’m looking back at things as if I’ve made mistakes or should have researched more at the time. Hopefully might get a better idea / some reassurance tomorrow.

I can only imagine the shock but so wonderful to hear it didn’t change anything on her arrival. How old is your DD now? Is there anything you recommend I try and get my head round or look into whilst the next few weeks unfold? Xxx

Hi @LAURAPAX,

DD is 9 now, happy, healthy and oh so funny! (Occasionally grumpy and sassy like most 9 year olds too)

I really, really don't know you need to worry about anything at the moment, but if it will help you to have something to focus on then the Down's Syndrome Association www.downs-syndrome.org.uk is a great place to start, their website is full of info. In the unlikely event that your baby is born with DS then the most helpful thing (in my experience) is a local group - you can find these listed on the DSA website above. There is also a huge Facebook support group called 'Future of Down's' but I wouldn't recommend joining until baby is here, it would be very overwhelming when pregnant.

Wishing you a peaceful last few weeks until you meet your precious baby - feel free to PM me anytime if you want to reach out.

Thank you @DownRightAmazing that’s super helpful and I appreciate so much you your thoughts and support. Had my scan Thursday - baby is still hanging on 10th percentile overall, all measurements have gone down but no ‘issues’ identified. Booked in for a c section on the 27th. I will PM you as it’s super helpful to talk to someone who understands. Thank you again xxxx

Scans are notoriously terrible at weight/size as there are so many variables.

I had a tiny bump and although not scanned through bump measurement was told my youngest was small.. he came 2 weeks late at 11lb 8!!

Wow @thinkfast cant believe they induced you so early for such wrong estimations! I’m so glad everything worked out but that must have been so scary for you. Did they give any reason why the estimates were so off after? Xxx

Thank you @Wibblywobblybobbly i really appreciate your experience and hope mine turns out the same! Like you it has completely ruined the pregnancy from 34 weeks I just want it over now so I know what’s what. Never realised it could/ would be so hard xxxxx

My last baby was apparently 3rd centkle and 3rd centile femur length from 16 weeks. I also had low Papp a so placenta would fail I was told. Baby would need to deliver early and be small I was told. In the end I went 13 days overdue and he was 8lb2.
your results are low risk, it’s much more likely that he’s either 1. Just small 2. Scans are wrong 3. A placenta/growth issue and in which case if he drops through the centiles or stops growing they will get him out asap.
good luck. My pregnancy was ruined with worry and it was awful. Especially as I had lost my previous boy at 21weeks. X

Babies come in different sizes, both of mine were 6lbers but completely healthy. Got told my dc were small during pregnancy but it's just how I grow them! Try to relax, listen to your health professionals but I would not overthink it

How are things @LAURAPAX? Hoping all is well with you and little babba

Hey @Cali8 thanks for checking in ❤️ we are doing well, we had our gorgeous baby girl 3 weeks ago and she is amazing. Her weight in the end was 6.15 so not small really! She does look dinky but wasn’t overally underweight. I honestly can’t believe she is here and safe and well, her weight is dropping a little under but seems to be feeding well so hopefully it will start piling on.

I did spend the last few weeks of the pregnancy completely stressed but as you all said there was no need to be 💕 I’m so happy and relieved after two miscarriages, failed ivf and 2.5 years of infertility we finally have our baby. Nothing will ever compare. Hope everyone is doing well xxxx

What lovely news!! Huge congratulations on your gorgeous little one! You have so much fun and magic to come ☺️ x

Than you so much @Cali8 💕💕 honestly can’t believe it.

Sending love to everyone and hope it gives some positivity to those who need it after infertility and pregnancy loss xx

My baby slipped down the centiles and was on the 2nd by the time we induced her. She was 6lb 5oz at birth, is a fairly small 1 year old now (but only really compared to my enormous first born). The placenta was failing and to be fair was quite a state. However she showed no sign of distress during birth, started gaining weight right away and so far is developing totally normally. Her size was the result of a sub optimal placenta which is common place and just means early delivery would be discussed.