Fluid on the back of baby’s neck

Hey Jodie. I can’t offer much support in the sense of having a similar situation… But, when my Mam was having me, she was told I was high risk for DS all the way through. I think my percentage was 1/2. They expected a DS daughter and then yes, they had me, with no DS. I hope you get more comforting news in a few weeks time xx 🩷🩵

Ok, so another way to look at this is the chances of DS are 0.76%. That means there's 99.24% chance your baby does not have DS. With Edwards its 4.35% chance of yes and 95.65% no. If you look at it like this, these aren't particularly bad odds! I know it's easy to say (I think with my first pregnancy we had something like 1:250 or something like that so I was a little worried as well) but try not to worry too much until you get results of more accurate tests. Is there any reason why you're not having NIPT done first? X

Hi! I completely understand what you’re going through and how overwhelmed you must feel right now. My firstborn had a high measurement of 4.6mm and was also found to be high risk from my bloods. I had a CVS which confirmed there was no chromosomal abnormality. He’s now coming up on 17 months and is perfect and healthy! With my second baby, I also had a high measurement of 4.7mm. Again, I opted to have a CVS which confirmed that there was no chromosomal abnormality. My due date is tomorrow and so far everything looks really good and she’s growing perfectly. I know they make it seem like it’s a diagnosis, but remember it is a marker and fluid immediately makes the blood tests high risk. My mother-in-law had the same thing with her daughter - high neck fluid & no abnormality, and so did one of my close friends. There is a high nuchal group on here which you may find helpful. I know it’s hard (and you’re going to anyway) but please please try not to stress 🙏

I spent weeks worrying, researching, panicking, crying & terrified. Only to find out that only 10% of babies with high nuchal measurements have chromosomal abnormalities and 90% come back with normal results. Thinking of you during this time ❤️🫶

Has a NIPT test been offered to you? It is a blood test and is way more accurate than the other one you have had (99%). It gives you a high or low chance outcome and you should have the results in under a week. You should be eligible.

Hey lovely! Just wanted to reach out as I had this in my current pregnancy. My NT was above 3.5 three times when tested. My NT bloods came back as high and it was 1 in 36 chance for downs but low risk for the other two so I can’t comment on that bit I’m afraid. I didn’t stop crying I was just so worried for our baby and what these health implications could mean. I have since had a further NIPT which is showing lower likelihood and when I went for a further scan NT was much thinner and the midwives think the babies positioning caused the issues initially. Im now feeling much more positive I rightly or wrongly did lots of research and found there are a high number of woman who get these results back who go on to have a perfectly healthy baby. Sending you lots of love as I know it’s such a frightening time 🫶🏼

Wow thank you everyone so much for your responses really appreciate and you’ve all put me in such a better head space by hearing all your stories, I haven’t been offered an NIPT what is that?

So my measurements were in the 4.5mm range and I was sat down for “the talk”. I had my NIPT test and an early anomaly scan at 16 weeks with a fetal cardiologist to check baby’s heart as that can be an indicator. Baby is perfectly healthy and the measurements have stabilised as it has grown. Basically now I’m 28 weeks and I’ve been told most higher NT measurements are just going to be bigger babies (which this one is 🤦🏼‍♀️) but for liability they have to prepare you for everything.

https://www.nhs.uk/pregnancy/your-pregnancy-care/screening-for-downs-edwards-pataus-syndrome/ NIPT is a blood test that's completely non invasive for the baby and it gives you much more accurate probability. You should have been offered it. If you weren't, I'd call your midwife or maternity hospital and ask about it!

@Jodie I can’t believe they haven’t offered you this! My screening midwife said most general NT blood tests will come back high just because of the nuchal screening. Mine was high (1in36 like I say) then the NIPT which is 99% accurate for anomalies (it just can’t specify which) will say if your risk is high or low and mine came back low. You can get it done privately but shouldn’t have to. It’s non-invasive and no risk to baby unlike the amniocentesis which carries a small risk of miscarriage. I would ring your antenatal clinic and ask them for the NIPT, you could get it done today and results usually take 5-7 days instead of waiting weeks for the amnio!

I can’t believe I haven’t been offered this either, I’ve just googled what an NIPT and that’s exactly what I need and the reason why I’m having the amniocentesis test. Which I’m not 100% happy with but the needing to know is a constant thing on my mind and I thought that was the only option. I can have the NIPT done through nhs or I can go private and pay. I’ve called my midwife and left a message. Just to clarify the test they do at the start of 12 weeks is just our basic testing and the NIPT in a more in depth one x

Yup, that's correct, NIPT is more in-depth. Basically what it does is it looks for bits of the baby's DNA in your blood and checks for certain markers within that DNA. It won't give you 100% certainty either way but it's much much more accurate than the basic one. A private one will be several hundreds pounds and you are definitely eligible for an NHS one so definitely press them for it! There are some reasons why couldn't have it (such as recent blood transfusion) but then a private one would be out of question as well and they should have at the very least discussed it with you! X

Hi Jodie. I just wanted to reach out and say that I can completely understand how you’re feeling right now. I’m sorry you are feeling anxious and this is going on. This happened with my first daughter who had an NT measurement of 5.4mm. Unfortunately, she had Turner’s syndrome and following further complications we lost her. There seem to be a lot of success stories above so don’t lose hope yet ❤️ is there a reason they haven’t offered you a CVS? I had one instead of an amnio and they can do it earlier so you wouldn’t have to wait so long? Also, now they offer you a NIPT if you are high risk so I would defo request one. Feel free to message me if you want to. I hope everything works out perfect 🙏🏼 xx