Too good to be true 🥺

[Chronicworrier23]

Well where do I start..
at a 10 week scan (I went as I had symptoms of miscarriage) I have learnt that there is too much fluid behind my babies neck (NT) and abdomen. Approximately 3.6mm behind neck (3.5 is cut off) and 0.8mm around tummy (0 tolerance).

I was whisked off to a room after my scan where I was told that this could indicate a chromosome abnormality or a heart defect or some other type of problem. My world shattered. I feel completely broken after 3 miscarriages already.. this is the furthest I had got since them. This baby is so desperately wanted and I feel so heartbroken that there could be something wrong. I feel so guilty.

I have been rushed through to see foetal medicine in 3 days to have further scans and a NIPT test. I know this is not 100% accurate and I know that I may have to have the amnio test, which I know has a risk of miscarriage, another worry to add into the mix.

I dunno, my gut feeling is telling me something is wrong. If it was just the neck fluid I think I could be more positive - but around the abdomen too is not filling me with confidence.

I am a huge worrier anyway by nature, and I know that if there was something wrong with my baby, the guilt would eat away at me but I don’t think I could go ahead with the pregnancy. I don’t feel it would be fair on the baby. My mind is racing with these types of thoughts.

has anyone at all had a positive outcome with this type of thing? Even if your outcome was negative, I would rather have all the facts.

from one very worried Mommy xx

I havent had experience of this exact scenario but my little boy was found to have issues at 34 weeks. In my experience fetal medicine are extremely negative and always give worst case. Please be ready for this. Im not the only one i know who has felt this.

@craigth162 im sorry to hear that and I hope your little boy is ok.
I’ve heard that they can be quite negative and I’ve read that on these forums too. I guess they don’t want to give you false hope but I have read that consultants encourage termination and then mothers didn’t choose to and the baby came out fine!!!

OP you might find it helpful to read Emily Oster's Expecting Better chapter on prenatal testing and the risk of miscarriage from amnio.

Sorry you're going through such a worrying time.

Thats exactly my experience qnd my friends. She was told at 12 weeks her baby definitely had major chromosome issues possible edwards or pataus. He is 100% fine.

My boy has hydrocephalus but again i was told chromosome issues etc and there are none.

Im not saying dont listen to them but try to have balance. I asked to speak to neonatal dr to ask more about the baby than the fetus if that makes sense.

Even if you say no to termination they will keep asking right up till birth. Make the decision you feel is right for you and stick to it.

Why do they do this? It’s so terrible. I feel like they want to push you to it before you even know 100% if anything is wrong.
I would rather have all of the tests and know before I make a decision

@Whataretheodds thank you for your message - I will take a look

My son was diagnosed with club foot at 20 weeks scan. We were sent to fetal medicine who couldn't be 100% sure how bad it was as he was crossed legged in my pelvis and suggest a termination. I refused so they kept scanning me to monitor it, at 28 weeks he had turned and the discovered his feet were actually perfect but they wouldn't admit it directly then decided he was to small so scanned me fortnightly to monitor that as well, checking his feet every time. Due to his possible foot and small birth weight they tried pushing C-Section on me. I had had multiple natural births before hand so refused.
He was born with perfect feet weighing 8lb 13oz so was they were incorrect for me.
I hope you have a more positive experience.

I’m sorry to hear you went through this and I’m so glad it all worked out ok for you.

I will keep this in mind and it’s good to hear some positive stories x

Yes, I had similar from a combined screening. Consultant in fetal medicine pushed me to terminate before we had the amniocentesis. We refused. Baby was fine.

It really saddens me to hear of all of these consultants pushing to terminate and the babies being ok. I wouldn’t terminate unless I had results from amnio xx

Even that can only tell you so much, not how severe any conditions might be. It made me really wary of their judgement, to be honest. I told them at the start that it was an IVF pregnancy, likely my only chance to have a baby, and they were still incredibly negative. As it is she's 100% healthy.

I’m so glad everything turned out ok for you.
can I ask.. do you remember what your NT reading was? Was there any fluid around babies tummy?
I’m really hoping from what I am reading that it just that the lymphatic drainage system hasn’t kicked in yet.

Hi OP - I have been in this situation. At my 12 week scan, I was told baby had too much fluid behind the neck (it was a REALLY high range) and it would be a chromosomal issue - not only downs syndrome, but other horrible things that meant life may just not be compatible / baby would be profoundly disabled. The nurses refused to do the blood test as they signed me off as a miscarriage waiting to happen / I would terminate. The nurse I saw was even trying to book me in for the op.

Well... the bloods came back absolutely normal. I remember the nurse who we saw (and who harangued us to book in a date to have the pregnancy ended) called us and she was really surprised the bloods were fine. However, she was still insistent that there was a problem. I opted to have an amniocentesis at 17 weeks and the following 2 weeks for the results was hell. BUT... my baby was fine. I saw a consultant afterwards at another scan and, in her words, my baby just "had a fat neck". I had regular scans for the rest of the pregnancy and I was told to have a c-section so they could make sure a paediatrician was on hand to check over the baby. My DD was born absolutely healthy with no issues whatsoever.

I really hope that it is the same for you and that everything works out OK x

** sorry, I should've made it clearer in my OP. The nurses after the scan at 12 weeks refused to do bloods but I had a total breakdown (very close family member was dying) and they finally relented. I remember the nurses saying "don't worry, you can always try again" as they took the bloods. Absolutely horrific. I did end up with quite bad PND because of what I went through.

@Blossomandblooms thank you so much for your response and I am so sorry that you went through such an awful ordeal. That truly is awful how they treated you. I’m glad you went with your gut and had all of the tests and that they were all ok for you. I really hope our situation turns out the same.
do you remember if there was fluid anywhere else? I’m also concerned as there is fluid around babies tummy not just the neck xx

Have the NIPT. It carries no risk to the baby and gives you a much more reliable answer. Remember that they are making measurements on a wriggly foetus that is really quite small at this stage. You usually get results back from NIPT in a week, so still time for amniocentesis afterwards if you feel you need that.

I was very worried as my NT was high risk and my initial blood tests apparently showed some unusual results that they thought indicated a chromosomal abnormality. NIPT was fine though, and had anomaly scan a few weeks ago and they can't see any sign of any issue at all. They've booked me in for some extra scans - they think in my case baby might be a bit small, in which case they probably dated slightly wrong so NT measurements were not being compared to what they should have been for that number of weeks.

I know its really hard, but try not to worry before you get more information. You're only just outside the ideal range.

@TinyTeacher thank you so much. That has reassured me some more. I am having NIPT on Monday I believe. So hopefully have results end of next week? Then will make decision from there.

unsure what you mean about measuring smaller so numbers not compared right?

what was your NT if you don’t mind me asking and what was your outcome? Xx

@Chronicworrier23 I'm in similar boat like you. 12 + 4 weeks and just had my scan yesterday. My NT is higher tho 4.5mm and they found fluid around the abdomen and lungs too. I'm so hopeless just some of these threads give me some positive thoughts. I'm very worried about the fluid around the abdomen and lungs too...
What was your outcome about the fluid around the abdomen?

Going to see fetal medicine tomorrow but from everything I have read Im just worried they will be extremely negative. They were giving me very negative feelings already at the US the sonographer was just so lack of emotions and no one really says anything.

@Valwithhope please try not to worry too much as hard as it is.
I am currently 18 weeks and I’ve had the NIPT test which came back low and I’ve had an anatomy scan and the fluid has gone and everything looks perfect. This is from a 1/120 chance of Down syndrome after my screening tests. Take one step at a time. Don’t let them be too negative with you. There are positive outcomes in this I promise. I actually have read a lot more positive outcomes than negative. It could be that the babies lymphatic drainage system isn’t functioning properly yet that’s all. Can be as simple as that xx

@Chronicworrier23 thank you for your kind words and I am trying not to worry too much any longer. I'm glad to hear everything goes perfectly fine for you! Doesn't it feel like sometimes it's a lots of stress and then everything turns out fine? I wish it was like this for all of us!

Just had the appointment this morning with fetal medicine and I'm extremely happy with them. My Ob was so nice but also very rational and didn't sugarcoat anything. He put me at ease how he talked it's just something can change...he seen equally many cases like mine turned out positive but also negatives. We are at 50/50 now as we don't have enough information.
We went for the CVS and done the procedure already. Just waiting for the results now. I think this was the best option for us regardless what's in the blood test. I feel much better now and just hoping for the best about the cvs result. Hopefully our chances will go up if we get a clear cvs xx

I had the same thing and the nipt said he was fine. After this test I was still offered amiocentrisis but didn't see it as necessary given nipt result.

Baby is healthy and fine!

@Unexpectedlysinglemum that's so fantastic I'm so happy for you! I really hope and pray our baby will be fine too. I'm so much more reassured after our consultation and the CVS. I just didn't feel the consultant being negative about this and he already booked me.in for 20 weeks scan so I'm really trying to be positive the CVS will come back clear 🙏🙏

Good luck let us know!!

They really do scare you as soon as it comes back high risk they start telling you all about the syndromes etc - In my opinion they should wait until a positive result for a syndrome is found before getting so serious

@Unexpectedlysinglemum I agree about getting more serious. That's why I felt much better yesterday after the consultation because he didn't worry me! When I had my scan they upset me so much I was in bits for two days. I still haven't had my blood back I hope that's also a good sign, maybe if it was bad they would have contacted me already...

Thank you!! I'm crossing everything for a clear result! X

@Unexpectedlysinglemum @Chronicworrier23 just update the blood test came back for high risk for DS 1 in 10 which I'm quite shocked tbh... it did crush me but Edwards and pataus has a very low chance (at least) Midwife reckons I'm gonna be automatically high risk as the fluid behind the neck and probably my age (I'm 35) so it's still 9 good chance the baby has no DS. I haven't had the CVS back yet and it's driving me up the wall and will this entire weekend I'm just absolutely terrified even I'm trying to be very positive...