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

High nuchal fluid

11 replies

Gingerlady123 · 29/08/2015 15:48

Just had a private baby bond scan.
Measured 11+1.
However their is lots of fluid behind babies neck so they suggested I ring my midwife Monday morning.
She also said their is a chance it could be because of a big genetic abnormality, hole in the heart or downs etc.
Really upset right now and scared I'll loose my baby.
Also I had one cyst in right ovary at 9+6 now I have two cysts each 25mm mean diameter and what looks like a blocked tube. So worried I'll never have a healthy baby now.
Photo of fluid measured white line to white line, boyfriend is convinced this is wrong as the second white line does not look connected to the baby. Also another photo of today and another one at 9+6.
So scared right now . Fluid measures around 4.5-5mm. Under three is meant to be normal. I'm only 21 and partner is 23 so wasn't expecting this to be an issue.

High nuchal fluid
High nuchal fluid
High nuchal fluid
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Gingerlady123 · 29/08/2015 16:17

Anyone to talk to please?

OP posts:
Gingerlady123 · 29/08/2015 16:44

Please any words of comfort ?
So worried about the blocked tube as well and the cysts. I feel gutted

OP posts:
Nousername2015 · 29/08/2015 17:06

Have you opted for nuchal screening at your nhs scan? If so then I think all the midwife will say is to wait for those results. If you haven't opted to have them then the midwife will probably put you forward for them, other than that there will be little that s/he can do until they have done further testing. When your nhs scan is combined with your blood results (which measures various hormone levels), you will then receive a new risk level. If they class you as high risk you will be offered further testing, although this is invasive. I can't offer any advice with the cysts I'm afraid although I have heard that they are usually harmless and also usually shrink by themselves over time.
This must be such a stressful time for you and your partner, make sure you both keep looking after yourselves. The wait will be awful but you will get the tests that you need to have to know more. Flowers

Hootytoot · 29/08/2015 17:08

Hello there, I'm so sorry you are going through this worry.
Do you have NHS scan booked? I can't quite remember the exact dates but I thought you had to be 12 - 13.4 weeks for the fold measurements to mean anything? Are you having the blood test at all?

Hootytoot · 29/08/2015 17:14

Just thought I would add this info incase you want to talk through cysts etc . This is Tommys line, with midwifes
'You can call our PregnancyLine and talk to a midwife free of charge from 9-5 Monday to Friday on: 0800 0147 800 or email [email protected]'
Is hard when you are worrying over a weekend.

Skiptonlass · 29/08/2015 18:20

Don't worry too much about the cysts - it's very common to have them (I had a massive one on my right ovary and it caused pain at first but then sorted itself out.) 25mm isn't big for a cyst.

The nuchal fold measurement is higher than ideal (please note this does NOT mean there is definitely an issue, it is an INDICATOR not a definitive result.) it could be any one of a number of things, or it could just be a random high result - some babies have a thicker fold and are absolutely fine.

So, what you need now is to speak to your midwife and arrange the nuchal fold scan/bloods as soon as you can - getting it sooner won't change the results but what you need now is information and answers, so push for them to arrange it quickly.

Another option you have is a non invasive prenatal test (nipt) like the panorama or harmony tests. Again, speak to your midwife or Google where you can have this done. You may have to pay for this privately. They take some of your blood and extract the foetal DNA from it. From this they can look at genetic issues with a high degree of accuracy. It's still not a definitive test, it's a screening test, but it's as accurate as you'll get unless you go for amnio. It's also no risk to the baby, it's just a blood draw. The harmony looks at the common trisomies (that's where you have three copies of a chromosome so for example Down syndrome is trisomy 21 - 3 copies of chromosome 21 instead of the normal two copies.) panorama looks at a few other things as well but is less widely available and a bit more expensive.

You still need the nuchal fold scan even if you do have nipt - the scan is very useful for looking at things like structural heart defects which aren't detected by harmony.

Try to get people to arrange the testing as early as they can for you - worrying and not knowing is really very hard on you. Really hope it works out well for you, and so sorry you're going through this.

Skiptonlass · 29/08/2015 18:22

hootie I think the nuchal fold window is 11 to 13.6.

I could be wrong though, if anyone wants to step in to correct me.

missmapp · 29/08/2015 18:44

Ds2 had a nuchal fold of 4.8mm at12 weeks. we were given a 1 in 4 chance of downs. We had an amnio, which was clear, but then had several other tests including a heart scan.

Ds2 is very healthy ( now 8yrs) but was born with a (minor) heart defect. Our consultant says heart defects are another cause of a high nuchal fold.

It is a worrying time, but advice and support is out there.

Good luck

StarSpotter · 29/08/2015 19:01

Sorry you're going through this. I can recommend the Harmony test, which as others have said has a higher degree of accuracy, although it is expensive - around £500. There's an approx ten-day wait for results.

Gingerlady123 · 31/08/2015 10:32

Feeling terrible today :(
I was meant to have a baby in March :( . So worried baby will miscarry naturally if theirs a major issue or the little heart will stop as their may be a heart defect.
How has this happened I'm only 21 no family history of conditions. I'm gutted my risk was so low and now it's so high.
Worried about the cysts as I had one then a week later two and what looks like fluid in my tube wtf! Does this mean I'll never have healthy children as something must be very wrong to cause a disorder at 21.
Nhs scan is 9th September, having my combined test I wasn't going to but now I have to after finding that out.
The waiting is awful I havnt done anything since I found out other than lie in bed and sleep and cry. I don't know how to pull my self together, the lady who did the scan was so negative she never said anything postivie. She didn't point out any soft markers. But why would my nt reading be so high at 11 weeks 1 day, or ride when we go back that it will be worse and all round baby and inside babies tummy etc

OP posts:
Skiptonlass · 31/08/2015 12:04

Please don't worry about the cysts - cysts on the ovary are really, really common. I had several in one ovary including one about 10cm wide and while it gave me some pain, it's gone now and all is well. Talk to your doctor about your worries - most ovarian cysts are benign and don't harm you, but of course they may want to check you out to rule out any issues like pcos.

how has this happened, I'm only 21

Firstly, nothing you did or didn't do. We humans are just not very good at things like dividing our chromosomes properly during reproduction. Miscarriage is extremely common. I'm not saying that in a kind of 'buck up it happens to lots of people' way, please don't think that! It's utterly devastating when it happens to you. It is very probably just blind chance. The NHS will investigate if you've had three miscarriages for example - I have had several friends who have had three or four in a row and then gone on to have healthy babies. It doesn't mean there's something wrong with you, not at all.

You don't need to pull yourself together - this is upsetting, waiting is torture and it is natural and perfectly ok to be upset! Do you have real life support you can lean on? If you do, use it! It's totally normal to be upset when there is a suspected issue, or even waiting for tests (I'm an older first time mum and I was just a wreck waiting for mine to come back!)

Until you have further NHS testing you just don't know if there is a problem or what that problem is. I suggest you write down the questions you want to ask them - it's so easy when you're upset to go blank and forget. Also be aware that the sonographer may not be able to answer them so ask if you can talk to someone qualified to answer your questions.
The issue may be nothing - some babies just do have a bigger nuchal fold, or it could be a chromosome abnormality or it could be a heart defect, or something else entirely. Lots and lots of heart defects are fixable now with operations and the children go on to live completely normal lives.

I'm so sorry you have to wait to find out, it's really hard on you. Don't feel like you can't be upset, but try to stay busy and distracted if you can, and seek family/friend support.

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