Downs Features on Growth Scan

[Jade09]

Hi everyone,
I'm currently 28 +5 and have been having regular growth scans. (Myself and baby’s dad are both below 5’4) the growth scans have shown femur length below the 3rd centile and also HC below the 3rd. I’ve been advised and booked in for amniocentesis… beside myself with worry.
I didn’t have the early screening as I didn’t want to know… now it’s been brought up at such a late stage I’m beside myself and feel like I can’t rest. My appointment is over a week away and I just feel that I’m going to be on autopilot until then. I have two other children 4 and 13 who will be massively impacted by this and the realisation that all our lives could potentially impacted is weighing on me.
Ive been crying all day and I feel so selfish but I just can’t shake the feeling.
Has anyone else had something similar? Not looking for reassurance really, just more understanding.
** I just feel in limbo right now and like the bottom has fallen out of my world. I think the thing I’m struggling with most is the fact that the hospital noted I have ‘options’ I understand that some people have no other option but I could never consider termination at this stage due to something that is not life threatening… it really upset me that even the hospital consider downs to be a reason to end a life. 😓

I don’t even know what I’m looking for here… just some understanding and maybe anyone going through similar.

If you and your partner are both below 5’4”, then surely it would be expected for your baby to be on the 3rd percentile? What has your consultant said the worry is?

What is the baby's abdominal circ? Does it tally more or less with the other measurements? Is it much larger and that's why they want to do amniocentesis?
Why aren't they offering you nipt (which is risk free)?

These questions aside, try not to be upset about the fact that the NHS is giving you all the options. They have to tell you by law, and in fact it would be outrageous if they attempted to conceal the fact that the choice is yours. It IS your choice. Own it and repeat politely and firmly to anyone who asks.

We’ve been having growth scans for the last 4 weeks (2 in total) they were concerned about the femur length so referred me to Fetal medicine for a specialist to scan and look.
We had that scan last Tuesday and she suggested the amniocentesis due to HC and FL being below the 3rd. It does say on my notes ‘could be a natural anomaly but also corresponds with chromosomal abnormality’ so worried!! They tested me for Zika virus to see if the HC was due to infection… which I’m a million percent sure it isn’t.
Other than that they’ve said nothing else… I felt like I was in there forever and whilst they don’t tell you they are worried… she was sighing throughout the scan. I just want to know for sure as it’s the unknown that is killing me 😔

She said that I was past the window for NIPT and screening and could only be offered diagnostic.. I’ll be 30 weeks when I have it done.
I’m so worried about the risks of having it done but I don’t want to spend the last 10 weeks with it hanging over me.. if there is something I would rather know and be able to best prepare for babys needs.
The AC is within the ‘normal’ range along with estimated weight.. still only the 10th centile but still not as low as the other 2 measurements. We’re both short.. I’m pretty in proportion but I would say baby’s dad has really short legs.
I have cried so much since Tuesday! Now I’m in the phase of feeling guilty that I even let the thought cross my mind that ‘this is going to ruin our lives’ it’s such a rollercoaster and really not how I expected the last trimester to turn out ☹️

I mean this gently, you turned down an early screening because you said you didn’t want to know. I assume if you had one, you wouldn’t have terminated regardless so this was a possibility that you were prepared for? I would perhaps spend some time looking into what it means for you, your baby and your family. There are a lot of charities etc who could provide information.

The hospital has a duty to inform you of your options, as you said yourself it will impact your lives, caring is a difficult job especially when it can extend over decades and decades and many people take that into consideration when continuing a pregnancy.

Taken gently… this is a conversation I’ve had multiple times over with family. I’ve turned down screening with all 3 of my pregnancies. It wouldn’t have impacted on my carrying on with the pregnancy nor is that an option now that I know there could potentially be a ‘problem’.
I would have rather enjoyed the 9 months (especially with it being my last) waited until birth and not spent x amounts of weeks worrying, having to explain to family and friends and having those uncomfortable thoughts. Yes i’m worried for myself and my family… but my main fears are about my unborn child and the fact that people with any kind of disability are quite simply treated like shit.
It may seem like an odd way to be but it’s just how I’ve always been.. deal with things as they happen and not have the stress of pondering and wondering… my pregnancy just feels like it’s turned into a series of investigations and hushed voices in the scan room and people feeling sorry for me now rather than the exciting and beautiful time that it should be.

I've had an amnio (at 24 weeks) and a CVS (two different pregnancies) so, if there's one thing i can say to put your mind at ease, that part of things will be fine- the actual doing of the amnio will be fine. I spent a lot of time wrapping myself up in fear over the procedure itself. Try not to worry yourself with that. It is an overwhelmingly safe procedure. Just rest and put your feet up for a couple of days after and try not to lift anything heavy.

The amnio will give you a result that may be difficult to hear and life changing for the whole family. But you will accept, you will overcome, and you will love and support your little baby, despite his/her needs.
The amnio may also give you very good news which will totally relieve you of all fear. You can move on and enjoy your pregnancy. Never stop hoping for the best, OP.
The fact that you and your DP are both hovering around 5'4" makes total sense as to why your baby would have shorter femur lengths.
My gut tells me that the amnio will deliver good news and bring you peace of mind.

MFM scans will always say that because they cannot rule out a chromosomal abnormality.

there would be other signs of downs such as an absent nasal bone and maybe areas of echogenic focus on the scan.

running an infection screen is common, as it’s non invasive.

diagnostic tests aren’t just to support you in a decision to keep the pregnancy, it can be to ascertain if baby needs special help after birth.

what centile is efw? Femur length is notoriously unreliable, the hospital I had my 2, measured it but i was warned it was the least reliable indicator .

all of this isn’t to say that baby does or doesn’t have a chromosomal condition but just some of the info I’ve been told along my very similar journey. (She was perfectly normal btw)

So AC is 10th and HC is 3rd. That doesn't seem like a huge difference to me (not an expert). I had a much bigger difference at a growth scan and nobody suggested amnio 🤷 Baby came out with normal length legs and I assumed it was just the oft cited 20% margin of error on growth scans.

I do believe nipt is effective throughout pregnancy. Google says the NHS doesn't offer it in late pregnancy but you could try to find a private provider happy to do it at later gestations.

If you can't afford private you have two choices I guess.

Amnio - find out for sure but 1% risk of stillbirth.
Wait it out - no risk to baby but lots of worry for you.
So I guess it depends on whether the 1% risk is worth it to you, to give you a more peaceful mind, when you definitely won't get a tfmr anyway and the outcome will be unchanged. Personally I'd take the worry and not the risk of losing my baby. But if your mental health will really suffer then you definitely need to consider your other kids too.

I know having a baby with Downs is a shock assuming your baby actually has downs it's not the end of the world I know they probably won't have the life you imagined for them and it will take adjusting and please god if that's the outcome that they are otherwise healthy , but they are a joy just like any other baby . Have a look at ourhuddybuddy on Instagram just for a more positive spin on things .

Thankyou for this… at this point I’m not even trying to reassure myself. I’m accepting it’s a possibility and anything other than that will just come as good news. I’m definitely at the stage where I’m thinking about life and I know that regardless of the outcome I will do my best to give her the life she deserves.
My 13 year old has really helped a lot… she overheard a conversation between myself and mum and asked if the baby has Down syndrome… in the words of my teenager ‘it really doesn’t matter does it, she’s still our baby it will just mean she needs extra love’. I’ll definitely check them out. Thankyou 🩷

Hi I an going to try and allay some of your fears. My younger sister is down syndrome and she is simply amazing. As a baby it was scary not knowing anything we worried for sure. Doctors didn't have a lot to say other than love her and treat her exactly the same as your other children and my parents were offered presented with adoption by social services as its really common for parents to do this. My sister smashed through every milestone. Walking started a little later at eighteen months she loved to crawl. Talking started at six months and she loves to talk and sing even now. She went to mainstream nursery where the staff adored her she stayed there for a year. Then she moved to a new school where she has thrived the education is at a slower pace with smaller class sizes and more one to one support. She models in her free time for a boutique close to our home. Everyone who meets her instantly falls in love she is a dream tbh and my nan says only special families get blessed with a ds child. She has brought our family closer together and she is a constant bubbly love bug. I have a high chance of having a child with ds and it won't stop me having a baby. It is scary but I want you to now how amazing our experience has been we have never been treated with anything but kindness and the ds community are tight knit and super supportive ❤️
Sending hugs I hope this might settle some fears and this may be a flash in the pan and everything is perfectly fine but just incase now that it's okay and you will be okay. Please reach out for support the community are there even in these early unsure times sending you a huge huge hug xx

Honestly, I think given the heights of you and your partner - especially him - it is much more likely that baby’s percentile is due to genetics rather than anything scary.

Were there any concerns at your 13 week scan - I know you didn’t have the blood test but what was the nuchal translucency measurement, was there a nasal bone etc? Any heart problems picked up?

Oh OP I know how worrying this all must be for you. I didn't come on to try and sway your opinion on anything, just to give you my own personal experience. I had nothing show up on any of my NHS scans other than a slightly short femur measurement, which I was told was probably due to the sonographer not being able to get an accurate measure due to baby's position. NT measurements were well within range, no heart defects showed up, nasal bone all fine. My baby was born and was diagnosed with Downs Syndrome at 48hrs old. Obviously an incredibly massive shock for us, but, he was here and he was beautiful and he was ours. Looking back (wonderful thing, hindsight) that was the only thing that mattered. He's now 5 years old and he's amazing. Yes he has his struggles and we still are navigating our way round his condition, but he is our baby boy. Whatever happens OP, if your baby does by chance have Downs, it will be ok, I promise. Take care x

This is what I needed 🩷 Thankyou so much for taking the time to share your experience with me and your sister sounds like an inspiration!
I have personally 0 experience with Down syndrome and my idea of what having a child with DS… is probably highly outdated and based 100% on things I’ve seen and read.
A family member quite bluntly said to me ‘what will you do if she’s disabled? It’s not fair on your kids’. I suppose a lot of my fears are about the rest of the world and how she would be treated (if it is the case)
Thankyou for taking the time to reply and reassure me! It really is appreciated 🩷

No other concerns aside from femur length and head circumference… I don’t think I’ve ever had a NT measurement.. there’s never been one on my scan report anyway. Everything was absolutely fine until my 20 week scan in which they highlighted she was small.. overall below the 8th but now she’s caught up she’s just got a small head and leg bone. No heart problems or anything skeletal etc.. I could just give birth to thumbelina but there are so many possibilities that my mind can’t rest. Downs is the least of my worries in comparison to some of the other chromosone conditions I’ve looked at ☹️

the other conditions, would likely be very very visible on a scan, so don’t knock on that door xx

Okay… so that’s all good… deep breath!

Being on the third percentile means that of 100 babies the same age, 97 babies will be larger than your baby, and two babies will be smaller.

Being on a smaller percentile in and of itself isn’t usually a cause for concern. Especially if your baby has been consistently tracking along a similar measurement. Someone has to be on the third percentile, and I’ve got to say, with two parents shorter than 5’4” then I would honestly think it’s very likely your child would be that person!

Please do keep us updated?

I would say that with both parents being fairly short, and under 5ft 4 is more than a bit short for a man (hope that doesn't sound rude, my son is likely to be that height as an adult too) then your little one is most likely just small with no other problems. It's really scary to get this kind of news though. My son was diagnosed with a cleft lip at the 20 week scan and then with brain abnormalities at birth. He is now 11 and very similar to children with downs syndrome. He is an absolute joy, smiles most of the time and he has a best friend who is similar to him.

Thankyou everyone who took
the time to respond. I went to my appointment today… had a long conversation with the consultant (who said he believes it’s much more likely genetics and small parents) and decided to not have the amniocentesis procedure.
With only 10 weeks left to go the risk really isn’t worth it… if I were considering not continuing with the pregnancy it would be different.
I’ll update everyone when she is born 🩷

We had a scan with a fetal medicine dr after they found some Down syndrome markers at the 20 week scan for dd2, it was echogenic bowel. The dr said at 20 weeks they can pretty much tell either way and she said dd2 looked all clear for genetic abnormalities and she was. Tjere are many more abnormalities that they would be checking for at your scan and you don't have those so I would think it's just shorter than normal legs 😁

@Jade09 wondering how it's hoping for you? I'm in a very similar situation (although myself and partner are tall) and worried sick.

Hey @Jade09 how are you both doing? Wondering if your gorgeous baby has arrived yet? I found a private Facebook group during pregnancy called Great Expectations, which is for mums with a high chance or confirmed diagnosis of DS, it was so helpful for me.

https://www.facebook.com/share/g/15KYneRVT5/?mibextid=wwXIfr

How did you get on?

@BloomingOrchidea if you advance search the OP’s name then you will see a very sad update.

@Jade09 I am so sorry about the death of your beautiful little girl, Lottie. You are both in my thoughts x