High nt, normal cvs results & seemingly normal anatomy scan.

[katiecee93]

Hello,
I’m new here so I m sorry if it is a long post or if I’m rambling. I feel like people on here may have more of an idea of what I’m currently going through and I am desperately seeking answers!

At my dating scan (12 weeks) I was told that baby had a high nt fluid of 5.9mm. we had all the blood work done, referred to the fetal medicine unit and told what to expect etc. The bloods came back normal with a low risk for downs and trisomy 13 and 18.
A week later we went to the fetal medicine unit where they scanned again and did the CVS test. We got the first part of the results 2 days later which came back with no abnormalities, then we Waited 4 weeks for the rest of the results, which again came back with no abnormalities. Since the tests came back normal i was referred for a fetal echo, which I am currently waiting for.
I had my 20 week anatomy scan, everything looked fine structurally, though when they measured the Nuchal fold again it measured at 7.8mm, but she said it looked different sizes at different angles. We were seen by a consultant to explain the still increased measurement. He told us that he could have every sonographer there scan me and they would get 3 or 4 different measurements as they’re not 100% accurate. he told me that from getting normal cvs results and everything he could see from the scan, he wouldn’t really see much point in doing another detailed scan and just to keep regularly checking babies growth.
I’m trying to keep positive in the fact that everything seen on my scan was fine, but the upcoming echo is making me so nervous and I have the worst feeling!
I’m just wondering if anyone has been through the same and what the fetal echo results ended up being?
Thanks

Today I feel very upset, my pregnancy notes were with my husband in his car and after the scan we had, I hadn’t read the report. All this time I thought baby did not have hydrops but I read it does and cystic hygroma. Despite the test for abnormal chromosomes coming back as negative, I’m very worried there is something else very wrong.
Has anyone been through this before and what were the outcomes?

@Kaymum2bof3 no experience here but thinking of you and praying 🙏🏼Xx

Hi our baby had a cystic hygroma at 12 weeks, 29 weeks now and all has been fine since. Fluid resolved by 17 weeks, we didn't have hydrops but did have some slight skin oedema at that first scan. I'm sorry you're going through this, it's so very stressful and there's so much uncertainty.
Could you speak to someone to explain the scan findings? I found it comforting to have definite answers from an expert and let them manage some of that uncertainty for me. I still worry something will be wrong but nothing else has flagged up concern yet. It's a whole lot of hurdles to get through. Sorry if this doesn't make much sense, got insomnia x

Good luck to everyone having scans coming up, it's reassuring to hear other people are going through this too. Thinking of you all x

@Kaymum2bof3 I'm so sorry you're having a bad time. It's the absolute worst. I echo the idea of calling and asking for clarity. I found that the level of care I had on Wednesday bought me a sense of calm in terms of being able to speak to experts who were patient with me. I also like to think that if something was terribly wrong, the Doctors would have been very clear with you about this (but I'm not a medic). I have my fingers crossed for you. It's a truly awful experience.

@Usplusone thank you for your message, I’m glad your baby’s cystic hygroma resolved, we are also praying for the same, it literally is like one hurdle to the other. We get happy with one set of results but then worry about the next...
the most nerve racking experience I’ve ever had to go through.
@MilkshakeandChips5 yes I will call the fetal department up today to seek clarity. I’m sure they are sick of me calling all the time checking if results are back, but literally feel like my life has been on a standstill until we know where we are with our baby girl.
Good luck to all the ladies who are going through similar issues 🙏🏼💕

Afternoon all, of those of you who had amnio's or CVS how long did you wait for the full results? Xx

@S83M for the first set of results after a CVS can be 3-5 days but the full results come between 3-4 weeks later. I am still waiting for mine and so nervous, everyday is nerve racking and so hard to stay calm and remain positive. They say it takes longer for the second set of results because the lab needs to allow the cells taken to grow to see their development to see if anything abnormal comes about.
When did you take the cvs? Xx

We were lucky and got our first set back after 2 days. I'm only on day 10 the waiting is agonising.

Hi

We had the CVS on Wednesday (around 13.00) and just got the first set of results that were clear. So now onto the next agonising wait. I really don't know how I'm feeling. I have profound relief combined with absolute panic at the idea that we may have to wait another 2-3 weeks to get bad news that will surely make everything harder. Such mixed emotions.

Does anyone know if the CVS tests for Turners syndrome? I forgot to ask the midwife and I can't remember it being mentioned?

Also, I have to say, the midwife who called me was amazing. I was shaking and when I answered the phone she said "it's all good, but I need to confirm your DOB before we talk further." I was so grateful for this small thing.

@MilkshakeandChips5 yes the CVS tests for turners, that was one that the dr had to explain to me when I had mine. It was almost explained to me asif that’s what the problem was.
Thinking of you all waiting for your results! it’s really the hardest time you’ll probably go through! we tried to look at it positively, the main chromosome tests were clear and the ones that we were waiting for for longer were things that could be dealt with. I think we found a list of the rest of the things they test for on the nhs. Might not be any use to you, but I found it helped a lot xxxx

How is everyone doing? I'm finding the rollercoaster of emotions tough. Feeling super anxious too! Hope you're all finding ways to pass the time.

@MilkshakeandChips5 not good here, planned my mums surprise birthday to help keep my mind off things so could focus on choosing balloons colours and what starters we would have etc... it worked for most of the day until it hit me again about how long left to wait.
Whilst still waiting for my results, I have been speaking to the midwife at the fetal department which tells me my baby has hydrops under the skin which seriously doesn’t look good. Makes me lose all hope of this baby surviving and even she does miraculously survive she will be extremely poorly... I feel broken again today... we still have another week or so until we get the second set of results and then a scan so then we would need to make a decision of whether we can continue or not....
Don’t wish this type of dread on anybody...

I'm sorry @Kaymum2bof3. It truly is unbearable waiting for news. Were the FMU able to give you any clarity on the extent of the hydrops? And you must be due news on the full CVS results soon yes? I found Midwife's I've spoke to to be a more on the negative side vs. Doctors.

I have to say, I'm struggling with the idea of waiting and getting more and more pregnant only to get bad news. It's like standing on the edge of a cliff and waiting to be pushed off at any moment. I've found my husband and I have stopped any nice conversation about the baby. We only talk about results and hospitals and hurdles. It's the most difficult experience and I wouldn't rush it on anyone.

@MilkshakeandChips5 I am expecting a phone call from the doctors tomorrow to give me more information on the extent but I think they won’t be able to tell me more about it until we see the results and the second scan (with hope that the hydrops has reduced)
Same here with mine and hubby’s conversations, it’s all about results and tests and worse case conversations. Our other kids are much more positive and talk about the baby as if she’s going to be with us soon and plan where she will sleep etc (will break my heart to tell them if she doesn’t make it for some reason)
I completely agree with you re the edge of the cliff feeling, I’m trying to cling on to the small bit of hope left inside of me but as more and more I speak with the midwives I am losing that... maybe I just need to not speak to them for a while until receiving our results and knowing which position we are in.

Which set of results are you waiting for and if you don’t mind me asking, what have the doctors told you about your baby?
Xx

I'm not sure how I feel about having hope. My husband is positive but I'm finding it easier to cope by disconnecting a little (which sounds awful).

We had an NT measurement of 6.8mm so very high. The initial scan report mentioned hydrops but our Consultant last Wednesday said he couldn't see this. He also did a thorough look at the anatomy and said from what he could see it looked normal BUT acknowledged the measurement is very high. We're waiting for the CVS microarray results so I think it'll be another couple of weeks before we know anything. The prognosis for measurements over 6.5mm is not great so it feels a little like we're prolonging the bad news but trying to take each day as it comes despite the fact that every hour feels like five!

@MilkshakeandChips5 that gives me hope, as I am also hoping the hydrops ends up going away, as initially they didn’t mention it being there but just noted in the report.
Did you get your initial results back regarding whether there is any abnormal chromosomes?
Ours came back negative which gave us some light but that light is getting dimmer every time we speak with the midwives telling us hydrops can take over indicating even worse issues.
Completely agree about one hour feeling like 5, I haven’t been able to work/focus on anything and having to tell colleagues so they understand why I am so distant... just a very scary experience...

@MilkshakeandChips5 and completely understand what you mean about hope, it’s easier sometimes not to expect so you are mentally prepared ...

@Kaymum2bof3 we had our initial results for Downs, Edward's and Pataus on Friday and they were clear. It felt almost bittersweet. My initial bloods indicated a 1:5 chance for all three which wasn't ideal.

It's really tough. I don't think anything will bring any relief to the waiting except for answers which no one can give me at the moment. I've exhausted googling and the results just depressed me further. I'm trying to do one day at a time and just do what I need to get through the day...

Do you think you'll get your full array results this week? When do you have your next scan?

@MilkshakeandChips5 yes I have exhausted google and to be honest, it doesn’t really help. Our array results are due either this week or the next (when it will have been 4 weeks since taking that test). Our scan is booked for 21st January, days are dragging. I don’t even know they will be able to give us the answers we want to hear. Baby may not look like to have anything but could have something that will be discovered at birth, again we have been advised to consider our ‘options.’ I’m hoping we get the array results this week sometime... trying to take each test at a time ...

Hi ladies,

I have been following this thread since I too received a call from my midwife about my initial screening coming back high risk.

NT was 3.mm
I was given a 1:33 chance of Down’s Syndrome
I think it was my bloods that had put me in this category as I’m 27 years old.

I had CVS on Friday and still waiting for results.

I’m finding it really hard to cope with everything. Looking after my 2 year old, no family around for support and severe anxiety.

I’m 14 weeks and still having morning sickness all day everyday, hating the smell of almost all kinds of food. And extreme fatigue. Has anyone had these symptoms from the start of the pregnancy?? I don’t remember it being this bad with my first.

Wishing you all the best of luck with your results.
Xxx

Hi Ashley,

I'm sorry that you find yourself here - it's miserable.

I have limited advise as still enduring the never-ending waiting but I have found trying to stay busy however that is has helped. I cleaned, played games, stocked the freezer, walked, binge-watched series - anything. But the days (and nights) are long and no one will be able to make you feel better during the wait.

My symptoms have died down a little in the last week which has made it a little easier to "forget". I have found the exhaustion has remained though and adding this to the exhaustion that comes with heightened emotions, non stop anxiety and barely any sleep is tough.

The best advice I've had is to focus on the next step vs. the whole picture. Unfortunately we can't control the outcome but just need to keep moving forward a day at a time.

Here if you need to chat!

Hi all,

I just wanted to give you an update you all. We got our NIPT results back and they were negative for everything. The relief we feel is brilliant and I just wanted to jump on here and thank each and everyone of you for your positive prays and thoughts. You will all remain in mine- wishing you healthy and happy pregnancies xxxx

@Mum0721 so happy to hear this and love positive outcomes!! Wishing you the best for the rest of the pregnancy!! X

Congrats @Mum0721

I also got my microarray results today (much, much quicker than I expected) and they came back clear. The midwife tried to reassure me this was good news and it's now a waiting game for the 20 week scan but I'm still feeling super anxious!