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Pregnancy

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

Original poster

Down's syndrome

49 replies

tashx · 06/09/2021 17:33

Hi all

I been for scan today at 22 weeks
Because at my 20 week scan
It was pointed out my baby's arms and legs were measuring small

Today the consultant raised the
Down syndrome conversation

I have refused further testing after he said
I still have time to terminate the pregnancy
If tests come back positive

( I'm not killing my baby that I can feel kicking me )

Nothing has been confirmed and I now have to wait 6 weeks for another scan

I feel so unwell with all the worry
I can't breathe I feel sick

Anyone have anything similar with an positive outcome 😥

OP posts:
A1b2c3d4e5f6g7 · 06/09/2021 17:41

I'm so sorry for the stress and worry you must be under right now.

Was wondering if they've offered you the nipt? If not, it's something non invasive you can get privately - we did. Just for peace of mind really, as six weeks sounds an awfully long time to be in limbo. There'd be no obligation to make any decisions, more just so that you'll know either way. Soft markers can be wrong

Original poster
tashx · 06/09/2021 17:45

Hi
I had the blood test at 12 weeks and it came back
Low risk 1 in 8,426

OP posts:
Original poster
tashx · 06/09/2021 17:47

Two weeks ago
They said babies brain and legs were small
Today
They saying babies brain is fine
But legs and arms small

OP posts:
A1b2c3d4e5f6g7 · 06/09/2021 17:50

Is that the standard nhs combined screening at 12 weeks? The nipt takes the fetal dna so is a lot more accurate, and some trusts started offering it this year.

I'm so sorry I don't know about the smaller arms and legs - replying to bump this up so others more knowledgable might see it and reply to you

waxytimes · 06/09/2021 17:59

I understand you're upset and shocked, but I'm not sure why you refused further testing after he said you would be able to request a termination if positive?

He wasn't saying you had to have a termination. He was letting you know you had options if you wanted to take them.

In your shoes I'd want to know more about the situation and if I was worrying over nothing, or if there was a situation I needed to face up to.

parietal · 06/09/2021 18:31

I've worked with kids with special needs, and know several kids with downs. If I had to generalise, I'd say that they are lovely, kind and loving people who can really thrive with good support. But they can also have a lot of additional health issues and needs, and providing enough support can be a lot of work for a family.

If you want to have this baby regardless of the diagnosis, then take time to think about what life might look like, and don't panic.

Original poster
tashx · 06/09/2021 20:22

No matter what
I love this baby and will never terminate
I'm just frustrated

OP posts:
LividLaVidaLoca · 06/09/2021 21:03

You should be able to pay around £500 for an NIPT blood test.

Some places do similar on NHS.

Original poster
tashx · 06/09/2021 21:09

I don't have £500

OP posts:
Albgo · 06/09/2021 21:12

Can you go back to the consultant and ask for the testing to get done?

Tlollj · 06/09/2021 21:14

I don’t understand why you didn’t take up the offer of more tests?

Alonelonelylonersbadidea · 06/09/2021 21:17

With all due respect, what are you sick with worry about? That your baby has DS? If so get tests! Then you'll know if you need to worry and prepare mentally/physically for your life with a child with DS. No one is telling you to terminate.

Onestep2021 · 06/09/2021 21:17

I’m sorry to hear you are going through such a hard time.
Ask, beg, demand the fetal dna testing. My hospital give it out for much less. Waiting six weeks is too much for anyone..:

ChardonnaysPetDragon · 06/09/2021 21:19

You can have the tests and don't need to terminate after that, no matter what the outcome. No one will push you.

ChardonnaysPetDragon · 06/09/2021 21:20

Ask, beg, demand the fetal dna testing.

There in no need to beg and demand. OP was offered the testing.

tellmekindly · 06/09/2021 21:36

Scans can be inaccurate, but I would in your case get the testing and then you can relax if it's clear or read up and research if it is DS. You are allowed to change your mind.

If you did choose to end the pregnancy you don't have to tell people what happened, just that they pregnancy unfortunately ended.

Thanks stay positive OP.

Original poster
tashx · 06/09/2021 21:39

All I was offered
Was the amniocentesis test
At a risk of miscarriage
I'm not doing that at 22 weeks

OP posts:
ChardonnaysPetDragon · 06/09/2021 21:42

Amniocentesis is the most accurate test, it's a diagnostic test.

Original poster
tashx · 06/09/2021 21:42

I also had Combined blood test
Which said 1-8,000

OP posts:
AliMonkey · 06/09/2021 21:46

My friends' son has Down's. For them, it was a very positive outcome as before he was born they were told he was going to have all sorts of health problems - heart, kidneys, etc, and would have limited abilities. He is a lovely boy - a real handful certainly, but healthwise he has no more health problems than most children, so as far as they are concerned it has been a really positive outcome.

Original poster
tashx · 06/09/2021 21:50

This is what doesn't make sense
Consultant said apart from arms and legs measuring small
The baby is completely healthy
Heart, brain, kidneys spine , everything healthy

OP posts:
Confused521 · 06/09/2021 21:56

With my first they said he had short legs but left it at that. His legs caught up with the rest of him and now they're really long (he's 12). Soft markers are just that. Try and be at peace with your decision to decline further tests, it's exactly what I would have done too. Xx

Raindancer411 · 06/09/2021 21:58

A friend was tod her daughter was going to be downs, but turns out they were wrong and she was born fine. Hoping this is the case for you. My daughter they told me she had short legs but when born she was a long baby

Original poster
tashx · 06/09/2021 22:02

Thankyou
I think consultant is hoping baby will have a grown spurt so everyone can stop worrying xx

OP posts:
Hunkydory99 · 06/09/2021 22:03

Hi OP. Our combined screening came back with the risk of downs being 1 in 80. I didn’t want to have the amino or cvs immediately due to the risk of miscarriage, however small it may be. Our trust offers the NIPT test for £290 which is what we chose as we needed to know a bit more about what may be going on with baby so we could mentally prepare ourselves. Some trusts offer it for free depending on your circumstances so it could be worth asking. Our plan was to have the NIPT and revisit further testing possibly past the 24 week ‘viable’ mark. The NIPT test came back as 1 in 10,000 risk, so whilst not a diagnostic test like the others it gave us enough confidence things were OK (our high risk screening results were solely due to my blood work, baby’s size and nuchal fold were perfect). May be worth another conversation with your consultant about what other tests are available? I appreciate in the moment it’s so hard to ask all the questions you may have as everything races through your mind. Wishing you all the best. X