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Pregnancy

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

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:
Nc4post99 · 06/09/2021 23:03

How small is small?

What centile are they on compared to HC and AC?

I know baby measuring small can be indicative of a genetic condition (such as DS) but without any other soft markers and your low risk 1st trimester screening, it seems unlikely (still possible) but unlikely.

Did they mention any other possible causes such as skeletal dysplasia? I’d think these would be quite apparent on scan.

Way too many consultants frame an amnio as ‘find out if you need to terminate’ especially in the case of Down’s syndrome and it’s incredibly irresponsible it should be to establish whether baby might need extra monitoring in utero and some special case after birth. Yes there are instances where tmf might be the options they parents chose but that’s not the purpose of the amnio.

My gut feeling is, if the consultants were especially concerned you’d be back in for another scan in 2 weeks, not 6. They are probably just mentioning it. Xx

Houserenoqueen · 06/09/2021 23:10

Totally get your decision not to have an amnio as it carries risks. I declined an amnio too.

However, having a severely ill baby, who was diagnosed postnally, I would really consider the benefit of a (potential) diagnosis if I were in your shoes. Not to terminate, but to understand what might lie ahead. I wasted months in shock.

SleepingStandingUp · 06/09/2021 23:14

It sounds like they've jumped the gun slightly op. It doesn't take much to get wonky reading's and in the absence of no others markers and an otherwise healthy looking baby, it sounds hopeful baby will be healthy x

tashx · 06/09/2021 23:16

Thankyou everyone
I appreciate it x

OP posts:
KathrynwithaKa · 07/09/2021 04:09

Hello 👋🏻

I didn’t have testing in my pregnancy. I had soft markers during pregnancy with smaller head and short femur.

His head caught up but his femur never did - I was NEVER at any point told anything to do with Down Syndrome.

My son was born at 36 weeks and was diagnosed with Down Syndrome 24 hours later.

He is perfect. He’s 6 now.

Please don’t worry, if your not wanting to terminate regardless and don’t want extra testing then please don’t worry.

On your next scan ask to see for babies nasal bone. Typical babies with DS have very flat short nasal bones x

Thefaceofboe · 07/09/2021 11:36

I think it depends on bothered you are at the potential your child has DS, and how much it might affect you during your pregnancy. If you can honestly say it wouldn’t make a difference and you’d carry on with the pregnancy (I’d be the same) there’s no point having further tests. I personally would want to know just to be prepared and have the tests x

secular39 · 07/09/2021 11:40

@tashx

No matter what I love this baby and will never terminate I'm just frustrated
That is beautiful. Even if your child had additional needs, with a mother like you- you'll go far.
cultkid · 07/09/2021 11:48

I was repeatedly told my son had tiny femurs

I'm 5ft 1 he wasn't going to be a fucking green bean was he?

He's 95th centile for height

The neuchal fold and the blood tests are a better way of checking compared to only the baby's size

Scans and tests don't change the outcome

You said you won't terminate the pregnancy (which by the way I fully agree with, regardless of baby having DS or not.)

I'm sorry you've been left in the lurch.

What is your stature like? Partners?

cultkid · 07/09/2021 11:49

If the blood said no then it's fucking unlikely

Sounds like a case of foot in his mouth and he's said something a bit slap dash

chloe11b · 11/05/2023 01:55

Incorrect, my blood tests came back normal but my baby has Down's syndrome

chloe11b · 11/05/2023 02:06

Heya
My daughter is Down's syndrome she's two years old now, all my blood tests were normal. But in my late scans they saw signs of Down's syndrome and I remember at the fetal medicine clinic the doctor said to me "I reckon you should terminate, your life will be very hard, the baby will face issues in life, they will be very delayed" I told her to stick it where the sun don't shine. There was no way I was aborting my baby, especially at 28 weeks pregnant! Disgusts me how they even allow terminations right up til birth with Down's syndrome, but my daughter is thriving, my life isn't hard, she made our lives so much better, she's truly precious

chloe11b · 11/05/2023 02:08

cultkid · 07/09/2021 11:49

If the blood said no then it's fucking unlikely

Sounds like a case of foot in his mouth and he's said something a bit slap dash

Incorrect. So incorrect

user1477391263 · 11/05/2023 02:16

It depends what the bloods are being tested for, surely?

There are the old-fashioned tests that give you a high, low or medium risk score, and which are pretty inaccurate. And then there are the NIPT tests which are pretty much 100% accurate.

OP, I understand that it's recommended to get a diagnosis before birth even if you have no intention of terminating, because it's best if the medical team knows that there is DS before the birth takes place, so that they can make appropriate preparations.

I have to say though, if you do not have 500 pounds to spare, are you going to be able to cope with raising a disabled child?

HollyBollyBooBoo · 11/05/2023 02:19

ZOMBIE THREAD?!

tashx · 22/05/2023 22:14

I just want to say
My baby was born perfect
He's now 17 months
Doctors got it very wrong

OP posts:
drpet49 · 22/05/2023 22:15

Tlollj · 06/09/2021 21:14

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

This!

Nubnut · 23/05/2023 07:22

chloe11b · 11/05/2023 02:06

Heya
My daughter is Down's syndrome she's two years old now, all my blood tests were normal. But in my late scans they saw signs of Down's syndrome and I remember at the fetal medicine clinic the doctor said to me "I reckon you should terminate, your life will be very hard, the baby will face issues in life, they will be very delayed" I told her to stick it where the sun don't shine. There was no way I was aborting my baby, especially at 28 weeks pregnant! Disgusts me how they even allow terminations right up til birth with Down's syndrome, but my daughter is thriving, my life isn't hard, she made our lives so much better, she's truly precious

Can’t believe they said this, outrageous. I would make a formal complaint.

Nubnut · 23/05/2023 07:23

tashx · 22/05/2023 22:14

I just want to say
My baby was born perfect
He's now 17 months
Doctors got it very wrong

Congratulations! Happy news for you :-)

Sandylanes69 · 23/05/2023 07:29

Please don't throw words like "killing babies" around; there will be people on here who have recently had terminations and they don't need your judgment. Hope all goes well with your pregnancy.

snowbellsxox · 23/05/2023 07:31

My sister had the exact same thing, my niece didn't have downs was just petite
She was in tears with it but also had the same view as you. Sending love.

nicedaydoreen · 23/05/2023 07:35

If the baby has down syndrome they may also have additional health needs that could require treatment at birth. By testing and knowing your baby will have the best medical support on standby at birth. if you don't know they may have to assemble that support after delivery.
Testing is not about you being able to terminate although it is a possibility it's about being prepared!

tashx · 23/05/2023 14:46

@nicedaydoreen
Consultant said
" I advise you to terminate pregnancy
Your baby has a lot of problems "

I had many checks thru pregnancy
I was induced at 37 weeks with 10 members of staff present
At birth
And
My baby was born perfect
Constultant apologised
And
Said he got it wrong

OP posts:
HBGKC · 23/05/2023 16:40

I'm happy to hear that your baby was born safe and sound, and glad that your consultant apologised.

Sometimes medics do get these things wrong.

user40643 · 24/05/2023 04:56

What ridiculous comments.
"Killing children"
"disgusting women terminating at that gestation"

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