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Downs diagnosis

33 replies

Princesspeachy0 · 01/01/2019 21:13

Not sure if this is the right place to post or not but goes...

I'm 35 weeks pregnant and due to have my baby in Feb, I had the test for DS with my 12 week scan and it came back high risk 1:47. The next day my DH and I went to see someone at the hospital who explained our options.
We decided we wouldn't have any further testing because we wanted this baby regardless.

Now it's getting close to due date I'm starting to get anxious, I really just want to know so we can move on from it all, if that makes sense?!

My question is once I've had the baby, will I know straight away baby has DS? Will the doctors know straight away? Do they do tests on the baby?

We haven't been told what happens next.

Any help will be appreciated Flowers

OP posts:
Littlebelina · 08/01/2019 13:08

I don't have any personal experience of downs but did have an amnio at 22weeks (as dd1 had a heart condition). It wasn't pleasant but nowhere near as bad as I feared.

A friend is ebf her dd who has downs. She need formula top ups initially but my friend managed to get her to breastfeed.

Hope everything goes ok whatever the outcome

Princesspeachy0 · 11/01/2019 07:27

Thank u @Littlebelina and that's very good to hear about the breastfeeding! Smile

OP posts:
nervousFTM · 12/01/2019 14:43

My combined tests gave me a 1:19 and my little girl is now 4 months old and perfectly healthy. We chose to have the harmony test after the combined results which showed low risk and also went through cvs which confirmed no issues but just wanted to say your odds are still pretty good to not have downs. My combined results weren't worth the paper they were written on!

LAURAPAX · 31/01/2025 19:59

Hi OP hope you are well - if you don’t mind me asking how did you get on. I’m in a kind of similar situation where I’m technically just over the cut off of high risk and due in 4 weeks and really playing on my mind. Xxx

curliegirlie · 31/01/2025 20:36

@LAURAPAX you've got this! If you want to prepare yourself a bit, have a look at the resources on www.down-syndrome.org.uk and Positive About Down Syndrome (www.positiveaboutdownsyndrome.co.uk). I think PADS also have a Facebook group for expectant parents, which you might find useful.

My daughter Cara is now 9 and in Year 4 at mainstream school. She recently did a reading test when she showed she had a reading age of 6 years 11 months 🥰. She's still pretty healthy - just gets very snotty over winter - and has the best sense of humour!

Good luck and enjoy your little sproglet!

Downs diagnosis
LAURAPAX · 02/02/2025 20:02

Thank you @curliegirlie your daughter Cara is beautiful you must be super proud!!

if you don’t mind me asking did you have any inclination of a potential DS diagnoses before birth? I think I remember you saying it was a post natal diagnose? Do you have any other children? This pregnancy is after 3 years TTC, two miscarriages and then failed ivf. It’s been such a heartbreaking journey and this was a spontaneous conception at 38 and I just feel like I’m going to get unexpected news. I’ve been so grateful to get to this point hence not really taking to much notice to the results as was comforted that sonographer has always said everything looks good. It’s only since the growth issues have I thought about potential reasons for this. I just feel like I’m going to get ‘bad’ news (but I feel better speaking to others to know it’s surprising but not necessarily bad) I hope you understand and it doesn’t come across in a negative way. Really appreciate your experience and thoughts xxx

curliegirlie · 02/02/2025 20:58

I didn't have an inkling before her birth. I was 32 and my chance for DS in the combined test was 1 in 1,900. Her NT was only 1.9cm so not a red flag either. The only potential clue may have been that her femurs were quite a low percentile, but I'm a short arse myself so that didn't ring bells at the time.

Cara has a younger sister who's 6. They get on fantastically the majority of the time and play together really nicely, with the inevitable occasional squabbles over toys etc. Her sister sometimes takes umbrage at being treated differently (e.g. having more homework!) but I've just linked her into Young Carers, which I hope can give her support around being the "big little sister". When they were younger, they were learning to talk at a similar time, and really helped each other along.

I've been TTC for #3, but it's been 3 years now so I'm on the cusp of calling it a day. Sorry for your losses. The current TTC was prompted by an unexpected pregnancy/early loss...it's so tough, but that's a story for another thread...

Do come back and tell us how it all goes. If your baby does have Downs Syndrome, don't see the diagnosis be the be all and end all. Go see NCT buddies, join standard baby groups, bounce and rhymes at the library, as well as your local DS and special needs support groups. All gave their place in the early months and years, and it can be comforting to remember that first and foremost they're a baby and will like all the standard baby things.

Nowadays Cara loves Paddington, the Worst Witch, YouTube and singing along to songs on Alexa!

WipsGlitter · 02/02/2025 21:13

We had no inkling at all. All scans were "normal". I had no other testing done though. Abortion was illegal when I was having him so it would not have made any difference.

My son is 15 now. He is still very child like - loves Moana and nursery rhymes - but he's mostly a very content child. You have additional worries but also less worries - no GCSEs or going to the pub to worry about!!

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