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Antenatal tests

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High risk for Downs- can’t stop crying

56 replies

Scottishgirl646 · 21/05/2021 10:56

Hi mummies,
I had a call on Tuesday to say that my Down’s syndrome risk from second trimester screening is high risk at 1 in 14. I can’t stop crying, I can’t eat, I can’t sleep, I’m beside myself with worry. My partner and I had already decided that we would terminate if anything showed up- please no judgement, we already have a 2 year old and we believe this decision to be the best for our family. Since finding out the result from the screening, I have completely detached myself from this pregnancy. I have returned all baby things I bought, deleted all my pregnancy apps etc- it’s my way of self preservation in case we have to terminate. Due to baby being in a difficult position we weren’t dated until I was 16 weeks. I’m now 17+1. The screening midwife did tell me that screening was less reliable in the second trimester.
I’m waiting for a NIPT at the hospital on Monday, and the results will take a week. I’m absolutely beside myself and I just can’t stop crying. Is anyone else going through this too?
All I can think is that if my NIPT is positive, then I have an amino, it may mean that I am having a termination at 20 weeks and I’m having recurring nightmares about delivering a baby at that gestation. I wake up in cold sweats hyperventilating. I feel like I have been living in a nightmare since that phone-call on Tuesday. X

OP posts:
Scirocco · 09/06/2021 12:24

@ivfgottahope

I'm sorry you're having this stress, I hope the cvs is reassuring for you. CVS and amniocentesis can identify some other genetic issues, and NIPT might be helpful in giving what are more specific risk profiles for you.

Don't give up hope. 1 in 43 isn't a certain outcome. If you were one of 43 people applying for a job, you might well not feel very confident of getting it. But when the stakes are so high for you and your baby, any risks can feel so overwhelming and distressing.

I don't know your personal circumstances or your history, so please don't take this as any judgement or assumption about your situation... I think a lot of people can feel very overwhelmed about the prospect of having a child with a disability or special needs, but it's important to remember that disabilities/additional needs can be anywhere on a wide spectrum and that scientific advances have managed to significantly improve quality of life for some people. If this is an area you feel you might want to learn more about, then your doctor, ARC and disability charities might be able to help you explore this? ARC can be a very helpful online resource for anyone going through antenatal tests and facing tough decisions.

Whatever decision you make, trust yourself that it'll be the right one for you and your family. I'll keep hoping for good news for you. 💜

Embracelife · 09/06/2021 13:27

You can ask for full microarray which caN look at all chromosome s in detail
There are thousands of syndromes beyond DS
Having a baby means you open to all kinds of challenging situations sickness medical issues disabilities...regular newborns can be challenging...
Perhaps talk through with a counsellor
What if... scenarios when baby is born
Since you just cannot screen for absolutely everything in utero
Good luck

Emizzle · 30/11/2021 14:19

Joined to comment my results as all your story's have been reassuring. I had a call to say I am high risk as 1 in 78, a NT of 3.20, HCG of 2.34 and PAPP-A of 1.27.
4 children where the test came back negative previously so it was a scare. Had the harmony blood test today but obviously really nervous, what does everyone make of these results? Thanks x

Mummy2O · 04/12/2021 04:01

Hi @Emizzle. How are you doing now? Your NT is in the normal range, so I would be hopeful. It is worth considering if your age could be a factor (every year over 35 increases your risk). Have you decided what to do in terms of further investigations? I'll be thinking of you.

Emizzle · 04/12/2021 09:46

@Mummy2O my results came back yesterday low risk for all 3 so was told to carry on pregnancy as normal, I'm only 33 so it was strange and scary! Thank u Smile xx

Mummy2O · 04/12/2021 12:40

@Emizzle That is great news. How are you feeling? It can take a while to process. Sending you love.

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