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Down syndrome anxiety

Zoegeach profile image
7 Replies

So I’m probably going to ramble on a bit here and I hope the title of my post doesn’t offend anyone, as it’s not my intention. But I’ll be 35 weeks pregnant on Tuesday and I’ll start at the beginning... I had the usual Down syndrome screening at my 12 week scan and I came back as low risk, about 1 in 2500, but all my friends my age (27) I had spoken to seemed to have much better results than me- -around 1 in 10,000, so since then I’ve been worried even though I know my result is still a low chance. I don’t know if it’s the paranoia or not but every scan picture I looked at I’d over analyse it and feel like the face/nose looked a lot “flatter” than other peoples scan pictures, so my worry about Down syndrome continued. My 20 week scan went fine and I felt better, but looking back at the report I can see that his femur measurement although in the normal range was on the lower side. Then after a few episodes of reduced movement, I was referred for a scan at about 31 weeks. There they picked up that his femur length was really small, pretty much not even in the range of the chart, and his estimated weight was too small. Cue a referral to fetal medicine where they scanned me again and said that although he was small, there didn’t look to be any issues- he was just a small baby. Looking back at that report I can see the femur measurement is still right at the bottom range, though not off the chart range like the week before. At my last scan they said he looked perfectly fine, had grown and was now at 17th centile rather than 8th at the scan where they said they picked up him being too small. On the report his femur measurement is still small, but just in the lower normal range. Stupidly I then googled “small femur” and first thing that comes up on google... Down syndrome. Since then I have felt physically sick with anxiety and don’t know how I’m going to last another 5-7 weeks to find out for sure. Either way if I found out now I’d keep him, there’s no way I could get this far and get rid of my child. But I literally can’t sleep and my chest constantly feels tight with fear, I feel like I’m losing my mind. I’ve looked up NIPT tests but even then the results say 5-7 working days and that’s after getting an appointment plus it’s £400 which as we are really saving hard for a house isn’t ideal. Don’t know if it’s worth it, seeing as there’s nothing I could do to change the result if it did come back as High risk?? But at the same time maybe it would be better to know?? I don’t even know why I’m writing this I guess I just wanted some reassurance or advice as I am just in such a state :( I know I will still love my child even if he does have ds but I’m terrified. I’m not the most patient person, selfish I know, and I’m just scared of what it would mean for our future and the future of our child. This is if my gut feeling and fears are correct ...

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Zoegeach
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7 Replies
FrancyItaly profile image
FrancyItaly

My advice is have the NIPT test, I know it’s expensive but at least you will know 💕

KiboXX profile image
KiboXX

I agree with FrancyItaly, I would pay and have the NIPT test done because it sounds like it’s causing you so much anxiety that it’s worth the cost to put your mind at ease. I’m sure the results will come back fine and then hopefully you can enjoy the remainder of your pregnancy xx

ancde profile image
ancde

Growth is also down to genetics after so far along, my scans have shown small femar (as well as ventricles enlarged) but I am 4ft 11. Femar is growing though so consultant is happy. Just something to consider as height of parents plays a part. :-)

a1234567 profile image
a1234567

1 in 2500 is still a good result and baby’s femur measurements are normal even though in the lower range. I understand that nothing is certain until the baby is born, but can you do anything about it? I mean, even if baby has Down’s syndrome, what can you do about it? Absolutely nothing. Even if you have the test and it’s positive, what can you do about it? Nothing! If it’s negative? There are thousands of things that remain unknown during pregnancy and we only find out about them when the baby is born. There are thousands of things that can go wrong, but chances are that all could go right. You never know and you can’t do anything. So I wouldn’t think about it and would try to occupy my mind with things that I enjoy. Anyway there isn’t much left now. Take care xx

Ajl46 profile image
Ajl46

I had the NIPT scan and blood test. although they say the results can take a few weeks to come back, mine came back in three days which was great. Whilst the scan and test is more accurate than the NHS Nuchal scan, you still get a probability rather than a definite result, so if that is what you’re after it may be better to save your money and wait. Best of luck to you XX

Eme3sh profile image
Eme3sh

1 in 2500 is still a very low risk. That means 2499 will not have DS so the chances of you being that 1 are reallly small. Your child has almost certainly NOT got DS, and honestly your fears are probably just focused on this but if not this then you might find it was something else. You could pay the £400, find out everything is fine and then focus on something else. I was very very anxious my first pregnancy about my baby being stillborn as my best friend had just experienced this and it was horrendous, but it’s about trying not to let those thoughts run away with you (way easier said than done I know!). Try lots of relaxation tapes, meditation apps that kind of thing and keep reminding yourself that the chances are very low. Some people get told it’s 50/50 and still then their child is born DS free. I hope everything goes well for you

Zoegeach profile image
Zoegeach

Update : I didn’t get the test, he was born last week and is perfectly healthy and doesn’t have Down syndrome x

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