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High nucal translucency

C2897 profile image
16 Replies

Hi everyone, i am looking for some advice or if anyone has been through the same as me.

I had my dating scan today im 13 weeks 3 days pregnant and midwife told me my babys fluid at the back of her/his is larger than it should be , they said it should be under 3.5mm and my baby has 12mm of fluid .was told that this could be because my baby might have down sydrome or a heart defect but there is a chance it could reduce to normal .was wondering if anyone has had any experience of this ? I will love my baby no matter what but its always good to hear other peoples experiences. Any help and advice will be greatly appreciated this is my first baby thanks agian.

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C2897 profile image
C2897
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16 Replies
jubbly profile image
jubbly

How stressful for you! Did u have a blood test for downs syndrome? In my area, if u want the blood test, they do it when ur at the hospital for ur scan. Contact your midwife to share your concerns! Sorry, I dont have any experience or decent advice for you! X easier said than done, but try not to worry x

C2897 profile image
C2897 in reply tojubbly

Thank you, i havent had a blood test but going for another scan in 2 weeks , i didnt want amnio as that tiny 1% chance of loosing my baby is too much of a risk for me . I havent been offered blood test though so ill look into it thanks . Whatever Happens ill love my baby no matter what so tbh as long as my baby is born and is happy and healthy nothing esle matters . Thanks agian , my midwife was very harsh about the situation giving us no hope in that the fluid might go down and said baby might not make it anyway .

jubbly profile image
jubbly in reply toC2897

Ur baby is going to be happy with a caring mum like you! Sorry to hear ur not impressed with your midwife, they should support you! At the same time they should prepare you, not scare you! I hope you get some answers soon! Good luck sweetie x

Filmgirl101 profile image
Filmgirl101

My cousins scan told them to be prepared for a down syndrome baby. Like you she refused the amnio, got all prepared for a special needs baby and she came out perfect. It's good to be prepared, but also know the scans aren't a guarantee.

C2897 profile image
C2897

I've read so many things that say scans do not always give you an accurate diagnostic but I'll keep being positive and try not to worry , I'll update everyone ones I've had my next scan thanks again everyone the advice is greatly appreciated xx

Becstar77 profile image
Becstar77

The scan alone is only something like 70% accurate. Have you looked at the Harmony test (99.9%)? Some hospitals have trials, you'd be a good candidate, or you can pay privately, but it's worth it for peace of mind xxx

C2897 profile image
C2897 in reply toBecstar77

What is involved in the harmony test ? Thanks x

Becstar77 profile image
Becstar77 in reply toC2897

It's a non-invasive test, just a simple blood test - it was about £500 but I think GOSH have just started testing in the UK, so the cost has dropped somewhat as the samples don't have to be sent o the USA any more. Nearer £300, my friend told me?

Within ten days, you can find out 99.9% accuracy as to whether your baby has DS, Edwards or Patau, and I think some other things too - plus gender, if you should so choose. x

nellynel profile image
nellynel

I think the harmony is a blood test cost about 500 privately but worth it I would say if you can afford it. usually the NHS offer the combined blood test with the NCT value to give you a risk score - so I would ask about that as it would seem you have only have half a test.

C2897 profile image
C2897 in reply tonellynel

Ok thanks I'll ask at my next scan in 2 weeks x

firsttimebaby profile image
firsttimebaby

My little boy is eight months old now. I remember the magic of my very first scan early in the pregnancy being completely ruined when I had the same result on the nucal fold test. It was even implied by the health care assistant that I might not wish to continue the pregnancy depending on the results of further testing. It caused so many scenarios and worries to go through my mind. However my blood result made Down syndrome a low risk, and at 20 weeks I had a more in depth scan of his heart which didn't flag up any concerns. Even so at the point of his birth it was in my mind that he could have an abnormality or syndrome as the risk hadn't be eliminated. And like yourself I did feel I would love my baby no matter what, however more than anything I did want a healthy little one, because this world is hard enough without additional needs or impairments and it is natural to want a child who is going to live life to the fullest and who can be a better version of yourself and thrive and do more... So I understand how you may be feeling or what you may be thinking. But in my case baby benjamin was an absolutely normal healthy boy and so far he has seemingly had no problems at all in any respect... so I think in all likelihood you and your baby will be absolutely fine. Good luck. :-)

LottyB profile image
LottyB

Hi, maybe you have got more information now, but I was in a situation which made me worry at my dating scan too. I had my scan, and the sonographer didn't say much, but she I went to discuss what happens next, they then at that point asked if I wanted to have the full screening blood tests done. I said yes. After the bloods were taken, the midwife then proceeded to scare me by saying 'when we get the results, you'll have to go.for an amnio' which I obviously freaked out about as as far as I was aware, baby was fine, and we didn't know about any problems at that point. I then spoke to a different midwife that told me if the blood tests were positive for down syndrome there were three options... (remember the blood tests are only a marker, not a definite) accept the results knowing you may or may not have a baby with a little problem, or there are two.further types of test depending on your dates. If you are around 14 weeks there's a non invasive test they can do to check for further problems, if you are 15 weeks or more, it would be an amnio. (dates are rough guides as my memory is pants, being 32 weeks myself!) whatever you decide to do, remember that amnios, as much as we have all heard horror stories are common procedures now, and the risks are small. My boyfriends mum had an amnio with both him and his sister and that was around 32 years ago, they are both fine, and do not have down syndrome. Sorry for all the waffle, but I hope it helps a bit. Love and hugs, charlotte and bump. Xxx

C2897 profile image
C2897 in reply toLottyB

Thank you I have had no option of blood tests but I just could never forgive myself if amnio went wrong , my partner and I have decided we will just wait and see when baby is born , I have another scan on the 10th so will be able to give everyone an update then , thank you for all the help it's really appreciated xxx

nellynel profile image
nellynel in reply toC2897

Did they not allow you to have a combined screening blood test b then? Thought that would be standard

C2897 profile image
C2897

Nope still haven't had a blood test , went for a scan yesterday and the fluid is all over baby's body , fluid in the right lung and the heart has been pushed to the other side of the chest , they said it is hydrops , baby is still hanging in there and fighting and baby's heart is strong im now 16 weeks pregnant so I'm praying and hoping my baby makes it even though the odds are stacked agianst my baby surviving the pregnancy there is always hope x if anyone has any advice on survival for hydrops it will be greatly appreciated as the hospital are no use at all thanks x

hopeful7890 profile image
hopeful7890

For future searchers -

I had a 8mm nuchal translucency (NT) reading at my 13 week appt and gave birth to a healthy baby boy (33 yr old Asian Am, baby biracial).

Our process: CVS (chorionic villus sampling) immediately after the nuchal translucency reading for the DNA microarray. Baby chromosomally normal! Baby then had a cystic hygroma diagnosis and genetic counselor recommended genetic testing for Noonan Syndrome. Insurance denied it. We decided against doing genetic testing out of pocket unless there were not good results from fetal anatomy ultrasound at 20 weeks. Fetal anatomy scan and fetal echocardiogram were normal! Baby kept showing up as very small in ultrasounds, so I had biweekly nonstress tests and then weekly tests closer to due date. He was born a normal weight. SIL had a 5/6mm NT test (white, 29yr) for second child, normal baby. Might run in family?

Baby at 3 mo has laryngomalacia, really bad sleep apnea and getting supraglottoplasty surgery to fix it so he can eat/gain weight better.

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