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Pregnancy

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

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Original poster

Increased NT @ 12 weeks

74 replies

mothersandsons · 03/05/2019 08:38

Hi everyone,

I really need support!
We went for our dating scan yesterday (12w4d), and were told the NT is raised at 4.1
We were offered CVS, and proceed. The results won’t be due for at least a week, and that final set will be available two weeks after.
The blood tests initially sent with the scan (before the CVS) has come back normal. Our risk has been quoted as 1:24

I feel helpless, sad, upset and angry. My husband I were shocked, and are basically in the same boat. We don’t feel able share this with our families/friends... in case... I don’t know we have to make very difficult decisions.

Has anyone had a similar experience? What was the outcome of your chromosome test? And... if you went on to have the baby... is he/she developmentally normal (achieving their milestones)?

I would love you to please share your experiences. Can’t seem to stop spontaneously bursting into tears!!

OP posts:

Bluebell9 · 09/05/2019 10:57

I'm so sorry for all of you that have lost your babies.
I hope you don't mind me adding to your thread but reading about others going through the same thing has helped me.

I'm 15+4 weeks pregnant with my first and I was called into the hospital yesterday and told that I the baby has 1 in 17 chance of having DS. This is from the quad test as they couldn't get a NT measurement at the scan.
My NHS offers the NIPT test so I had blood taken yesterday and I've got to wait about 10 days for the results. DP is telling me to be positive but I'm scared.

Pollypocket5 · 09/05/2019 11:14

I am so sorry to hear you are all going through this :(

@Bluebell9 I found out my high NT score at my 12 week scan. They haven't got my bloods back yet but have been referred. Have you decided whether you will have the amnio or CVS?

Bluebell9 · 09/05/2019 11:23

We are waiting for the results of the NIPT (Harmony) test to come back as they are 99% accurate. It looks at the babies DNA in the maternal blood. From what I've read, I'm too far along to have the CVS so if the NIPT comes back high risk, I'll have the amnio.

@Pollypocket5 when do you expect your blood test result?

Pollypocket5 · 09/05/2019 11:30

@Bluebell9 I'm not too sure hopefully today or tomorrow. I wanted to have my app with the consultant when I had everything back to make a decision on the diagnostic tests. The Sonographer i saw was horrible so just made everything worse.

I will make a decision on Tuesday but I think if they recommend it we will go for the CVS. It's just torture at this point. I did contact arc and they have been amazing.

Bluebell9 · 09/05/2019 11:33

@Pollypocket5 Hopefully you have a lovely consultant. Mine was wonderful, she held my hand when I started crying and even gave me a hug at the end.
I'll keep my fingers crossed for you.

Original poster

mothersandsons · 09/05/2019 11:44

@Pollypocket5 I’m sorry you are going through this too. From what I’ve read (a lot in the recent days)... NIPT is not a diagnostic test, and you may be asked to have the amniocentesis.

You can refuse, if you don’t want to for any reason. Each parent is different... there is no right way of doing things.

Please message back if you want anymore information x

OP posts:

Original poster

mothersandsons · 09/05/2019 11:56

CVS for 11 to 14 weeks
Amniocentesis for 15 to 20 weeks

This is the general rule

OP posts:

Bluebell9 · 09/05/2019 11:56

@mothersandsons because the quad test is only 75-80% accurate, my hospitals policy is to have the NIPT first as it is non-invasive and then if that comes back high risk, I'll be offered an amniocentesis.

Pollypocket5 · 09/05/2019 11:59

@mothersandsons Thankyou so much for your response. If you don't mind me asking what were your measurements?

I'm really hoping for a good consultant and one that will explain everything and be a bit more clearer. My partner is very positive. He is literally holding us both together. I feel like I'm preparing for the worse before I even have seen the consultant.

Original poster

mothersandsons · 09/05/2019 12:07

Our NT was 4.1 (I’m pretty sure they have a legal obligation to measure your NT if you choose to have it measured).
The combined results (with bloods) 1/24 for Down’s and 1/597 for Edwards/Other.
We were offered CVS the same day (even before the bloods came back). We wanted to and needed to know.

Phase 1 of the results came back within 2 working days. The PCR is still pending but we were told it won’t change anything for us.

I hope that helps.

OP posts:

Original poster

mothersandsons · 09/05/2019 12:09

@Bluebell9 can I ask... where is your hospital based?

OP posts:

Original poster

mothersandsons · 09/05/2019 12:12

@Bluebell9 and @Pollypocket5 wishing you both all the luck.

OP posts:

charlhac · 09/05/2019 12:17

Hi guys
I also had a raised NT measurement of 3.6mm, the sonographer said she would refer me to a specialist and fast track my blood tests.
The specialist called and does not want to see me until I'm 16 weeks in 4 weeks! Anyone else have to wait this long?
Also how long do you think it will take to receive my blood test results?

Bluebell9 · 09/05/2019 12:50

@mothersandsons I'm on the Isle of Man. They can't do the amnio here so I would be sent to Liverpool for it.

I think I would have gone for the amnio if it had been offered as the results are quicker and if the NIPT comes back high risk, I'll have to have the amnio anyway.

They didn't get a NT measurement for me due to the position of baby, they gave me 2 scans on different days and tried for ages, made me go for a walk, drink cold water etc to get baby to move but he/she wasn't cooperating.

Original poster

mothersandsons · 09/05/2019 13:00

@charlhac our blood tests (taken at the same time as the scan) were available the same day and given to us before we left

OP posts:

charlhac · 09/05/2019 13:09

I didn't get mine on the day, I think I should receive them through the post

QuickQuestion2019 · 09/05/2019 18:57

@mothersandsons I had 1/15 risk at 12 weeks. CVS came back clear within three days. DD now nearly 5 and had hit all milestones and targets early or on time.

Pollypocket5 · 09/05/2019 19:01

@QuickQuestion2019 if you don't mind me asking was it your NT that was high?

How do you cope with the waiting. My app with the Fetal medicine specialist is not until Tuesday and I feel like I'm driving myself crazy.

Original poster

mothersandsons · 09/05/2019 19:29

@QuickQuestion2019 I’m glad you had a good result and positive outcome.

OP posts:

QuickQuestion2019 · 09/05/2019 20:20

@Pollypocket5 - I can't remember exactly, it was between 2 and 3. Wishing you all the very best.

QuickQuestion2019 · 09/05/2019 20:23

@Pollypocket5 - honestly, truly I coped very badly! I cried and slept a lot. It was stressful but it passed. Just be kind to yourself.

Pollypocket5 · 10/05/2019 16:57

@QuickQuestion2019 Yess I'm not coping at all. However just spoke to the hospital and they gave me low risk for Pataus and Edwards.

High risk for downs with 1:21. She did put that into percentage and it's a less than 5% chance the baby will be born with DS.

She has advised me to speak to the consultant about the harmony test. Has anyone had this on the NHS? My main question would be what's the difference between the combined screening and the harmony test?

QuickQuestion2019 · 10/05/2019 17:34

The harmony test is 99.99% accurate and will give you an actual yes/no answer as it looks at the trace DNA. Combined screening does not examine DNA, it looks at Nuchal fold and blood markers.

wishfull888 · 10/05/2019 17:40

Its no longer available on NHS in my area, don't know about others. A quick google will tell you the differences. Harmony essentially looks at the dna make up in maternal blood (which by 10w should include baby's dna too) . Whereas screening is looking at 2 x pregnancy hormones only. So harmony is meant to be more a lot more accurate as to the risk , however it is only another screen - it is NOT diagnostic so will only tell you another number & as with sll the tests there is a % chance it can be wrong (false result). We had a 0.009% chance from the NHS screen of DS. We still went ahead and did the CVS as wanted to know one way or another for sure & the consultant told us the risk of mc was similar to the chance harmony was wrong. It depends how you look at it.
Good luck with your choice, sure the consultant can explain better than me.

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