Fluid under baby skin 10 week scan, high risk.

[myhappyevernow]

Hi All,

I am currently pregnant with my 3rd child and am lucky to have two healthy children. I went for my harmony test at 10 weeks but sonographer said I was actually only measuring 9 weeks so to come back in another week. I knew myself I couldnt be 9 weeks so was a bit worried baby wasnt progressing.

I went back in Tues for harmony and baby did measure a week further on and strong heartbeat however alot of fluid behind babys neck and down back. I even noticed it on the scan myself. She wasnt very hopeful and said indicitive of chromosome issue ot heart problem. She said I was likely to miscarry but proceeded with blood test. I was referred to fetal assessment then on Fri and fluid is confirmed to be 4.3mm and also on abdomen. I'm waiting on harmony results next week and also scheduled for cvs fri if I decide to based on results. He said I'm a 1 in 2 chance of something showing on harmony.

I feel so lost and sad, my consultant said I'm still high risk for miscarriage before next fri even. I wondered has anyone else been in my shoes, not looking for unrealistic outcomes but just support I suppose. The waiting is really difficult and at this point not even sure what to hope for xx

Hi, I just wanted to reply to say I know how you must feel as this is similar to what I had at 12/13 weeks, my NT measurement was similar as it was 4.6 and like you I was told that there was a 50 percent chance. Unfortunately things didn’t work out for us, after an amnio I found out that my baby had Patau syndrome, I found out that my baby’s heart had stopped beating at 19+3 and I had my baby at 19+6. However I know there will be lots of other people that are in the 50 percent where everything works out ok. If you are having the harmony then I guess you will know soon if there is a major problem. I hope you don’t mind me telling you about the outcome for my baby, I don’t want to upset you but just wanted to say I know how you are feeling x

@notinthestarsigns Thank you so much for your reply I really appreciate you sharing your story and am so sorry for your loss. It really helps me to even know other people went through something similar as it can feel quite lonely at times. Aside from my husband and parents I haven't confided in anyone yet as i feel I'm much to sensitive right now to risk any input if you get me.

I guess as you say I just have to wait now for results. My gut feeling tells me the harmony will show something but the fear of waiting for that call is just making me loose my mind.

My DC 4 had a NT measurement of 4.2 at 10 weeks. It was observed during the CVS which had been scheduled as DC3 had a chromosome disorder which led to his stillbirth.

DC 4 turned out to be fine, but it was an awful time and despite it being over 10 years ago I remember the stress and anxiety like yesterday.

I wish you the very best.

The waiting is so hard, you just feel like your in limbo and that your life is on hold. And I completely agree about feeling alone, mine was my first baby and none of my close friends or family had ever been through anything like I did so that makes it difficult too. I found myself reading everything and anything I could find on the internet, I’m not actually sure whether that helps or not but I couldn’t help myself at the time. I had a long wait from 12+5 to 16+5 as the consultant I saw at 12+5 didn’t even think it was worth me having the harmony as he thought I was about to miscarry and so just said to come back in 4 weeks if baby was still there. When I went back at 16+5 baby was still there and apart from the original NT issue there was nothing else abnormal picked up on the scan so things were looking a lot better! That was when I was given the 50 percent chance of baby being born alive and well which felt amazing at the time. I couldn’t have the amnio at that appt as the membranes has not fused and had to go back a week later. I eventually did have the amnio but due to the delays I didn’t get the results until 19 weeks so I had a lot of waiting which wasn’t easy. Try and look after yourself as much as you can. If you need anything or have any questions then feel free to message me. I’m sure your head is just all over the place at the moment x

Also I don’t know if you know but the consultant told me that whilst the harmony test is pretty accurate for Down’s syndrome, it is not as accurate for some other conditions, so if you feel that you do need to know if there is an issue, you may want to consider the CVS whatever the outcome of the harmony.

@PegasusReturns thank you for replying, I'm so sorry to hear of your DC3 but really glad you had a positive outcome with DC4. I know what you mean, I know now one way or another whatever the outcome this harrowing time will never fully leave me. I know I'll have to move on when the time comes but can only imagine it never fully goes.

@notinthestarsigns I'm so sorry to hear of all the delays for you. I'm in Ireland and all sonographers incl my consultant have mentioned they believe i am high risk for miscarriage too. But everytime i got back baby has a strong heartbeat. I'm 12 weeks technically but baby only measures 10+4 so growth is lagging too. I've convinced myself its T18 feom research but I know I should stop googling but it's impossible when left in limbo. Thanks so much for the support and well wishes, I honestly think the only ppl who understand are those that have actually been there. I plan to have the cvs regardless if harmony comes back positive for T18 or T13 but for T21 I think its accurate enough but haven't fully decided.

Hi Op,
Sorry you're going through this. Has anyone recommended the ARC charity to you yet?
I found them very helpful. I hope things turn out well for you. X

@NoCallerID I did see that recommendation on other threads. I am based in Ireland though, is it a UK only helpline? Thanks for message x

Hi, just wanted to add my story so far. At 12 week scan (12+5) they found what they thought was a cyst in the baby's tummy and couldn't measure the NT so I couldn't have the combined screening. I was invited back at 14+6 to try get some more measurements of baby and the abdomen was filled with fluid and i was told there was a high risk of miscarriage. I was referred to 2 different fetal medicine centres over 1 week and had a CVS 2 weeks ago, which I was adamant would show a chromosomal or genetic abnormality but all my results have been normal. Just hoping there's still a heartbeat at my appointment next week so we can look at treatment options to relieve some of the fluid in baby's tummy. Im 18 weeks now and still high risk of miscarriage despite normal results but hoping there's still a chance. Hope you get your harmony results back quickly next week will be thinking of you x

Very similar story to mine Fluid was 5.6mm and I should have been 12 weeks but baby girl measuring 11 weeks. I didn’t do harmony and went straight for CVS which confirmed Edwards syndrome. I had Surgical termination a few days later on March 13th. It’s absolutely heartbreaking to find yourself facing issues like this. I’m so sorry you are going through this and I urge you to do the CVS as it will tell you with certainty what is it isn’t the issue. Harmony only gives you risk so I wouldn’t go off those results.

This was my scan for my beautiful Millie ❤️ I’d be 30 ish weeks now if she had been ok. We’re TTC again but I’m 40 now so not sure it will happen so easily

I wish you the best and I’m praying for you and little one xxx

@RunnerGirl123 So glad to hear your results came back ok, I will be keeping my fingers crossed and thanks for sharing.

@Balajake I'm so sorry for your loss, Millie is a beautiful name and she looks so cute in that pic. Its heart breaking but I will keep my fingers crossed for you ttc.

My harmony results came back high risk for Edward's so had a cvs done last Friday but the fluid has all increased to 6.4m and I'm 12 weeks now so I've to wait for a result end of next week and my consultant said he'd be shocked if it didn't confirm Edward's. If it does I will be having medical termination following week which actually breaks my heart but I know it is the right choice for me.

[quote myhappyevernow]@RunnerGirl123 So glad to hear your results came back ok, I will be keeping my fingers crossed and thanks for sharing.

@Balajake I'm so sorry for your loss, Millie is a beautiful name and she looks so cute in that pic. Its heart breaking but I will keep my fingers crossed for you ttc.

My harmony results came back high risk for Edward's so had a cvs done last Friday but the fluid has all increased to 6.4m and I'm 12 weeks now so I've to wait for a result end of next week and my consultant said he'd be shocked if it didn't confirm Edward's. If it does I will be having medical termination following week which actually breaks my heart but I know it is the right choice for me.[/quote]
I’m so sorry. It’s just a horrible situation to be in and you wonder why all the time. I’m just sad about it all the time and don’t really have anyone to talk to. Nobody understands how it feels to have something so precious taken away. All you can do is try and cope little by little and get through each moment. People keep getting pregnant and having babies and as much as I’m happy for them I feel sad and anxious I’ll never get my rainbow.
I’m so sorry and I’m sending hugs because this is going to be very tough. I felt so numb trying to deal with it all xxx

Thanks OP. Unfortunately, although we've got the all clear for genetic issues from the CVS, our little one has no chance of survival if they make it to full term and we're likely to miscarry at some point over the next 20 weeks anyway, so we decided last week that a termination will be the best thing for me, my partner and the baby.

Here if you need to chat about making this decision.

Thanks for the update OP and I'm sorry its not better news. My 1st pregnancy had an NT of 6.5mm and the NIPT showed patau syndrome (T13). I had a medical TFMR at 11 weeks. Sorry if TMI, but some things to know about the medical management:

• The meds cause diarrhoea, vomiting and a high fever. My face went bright red like a beetroot. Paracetamol helps though.
• Once they put the tablets in, put a huge pad on. I naively didn't expect to have waters breaking
• One thing I hadnt considered, was being asked what we wanted to do with the foetus after the pathology results had come back.

Feel free to ask any questions you have. The ARC website might be helpful too.

@RunnerGirl123

Thanks OP. Unfortunately, although we've got the all clear for genetic issues from the CVS, our little one has no chance of survival if they make it to full term and we're likely to miscarry at some point over the next 20 weeks anyway, so we decided last week that a termination will be the best thing for me, my partner and the baby.

Here if you need to chat about making this decision.

I’m so sorry for you and your sweet baby 😔 are hope you are getting the support you need ❤️❤️❤️

@runnerGirl123 I am so sorry to hear you're news. It's so devastating and a horrific decision to have to make. I really hope you are doing ok I know it will be a difficult road ahead.

Thanks @Elouera fie the information I am still waiting for a date as here in Ireland everything takes such a horrific lenght of time.

They have said now there is a potential chance of surgical termination end of next week or else medical termination the following week. They said to think about it myself. Has anyone experience of surgical? I worry about damaging the womb but it dies sound less traumatizing but again, I had come to terms with a medical so I'm torn. I may not have the option but I guess just want to be prepared. Had a scan today and heartbeat still strong but fluid up to 8mm and I'm 14 weeks but baby only measuring 12+3.

I had a surgical termination. They put you to sleep and for me it was the right choice. I demanded to see the baby afterwards but nothing was recognizable but I’m glad I saw because I’d always wonder. I lost a litre of blood and was send home with iron tablets. I bled for around 10 days I think. That was March 13 and I’ve been TTC since with no luck yet but I guess it’s still early

Oh @balajake it is so hard isn't it? I'm 14 weeks now so not sure surgical will still be an option have to wait until Tues and see. I dont even know which one would be preferable for me. It's so heartbreaking to have to even decide something so horrific. It's a grief like no other I and do believe it has not even hit me fully yet I'm still in shock. I know when she is gone I will be devastated again.

I really hope ttc goes well for you, I will keep you in my thoughts. I do not know if or when I will but I would love to in the future but so so scared after this too. X

I sometimes check this forum as I found it a comfort 2 years ago when I was going through similar. At my 12 week scan by baby’s NT measurement was 6mm and my bloods were fast tracked and my baby was given 1:6 chance of having Edwards. I also had a harmony test and CVS test the following day. My CVS results came back first confirming Edwards.

It was such a tough time and I remember the uncontrollable crying, the waiting and the limbo. I was offered a medical termination but I knew that I wanted surgical. We arranged this through BPAS and it was actually ok - the worst day but a relief to start healing and trying to move on (I already had two children) We decided to donate our son to UCL for research as I wanted something positive to come from this. It was still a shock to not be pregnant though, to have your baby taken - it really hurt me to the core. I wasn’t sure we’d try for another baby after we lost our boy but after a few months I felt such a gap and luckily I fell pregnant 7 months after the termination and am now so lucky and happy to have an 8 month old baby girl.

I am so sorry you are going through this. It was a dark time for me and we were offered counselling which I found did help as my husband did not realise just how much I was still hurting until we spoke at these sessions and took the time to do so. I cried a lot and gradually opened up to some friends. (I found most people did not really understand). Take care and take it one day at a time xx

Hi @Otto8 I'm so sorry to hear you have gone through this too, it really is the worst. So happy you have a healthy 8month old girl now, it's hard to see passed the dark days now in the thick of it but I hope there are better days to come for me too.

Unfortunately my hospital cannot do surgical this week as they are saying I need to wait for results of round two of the cvs before actioning. It's so hard as I had my bags packed and my two children set up with childcare only to hear last minute. I expect these results Fri and should have a medical next week because I'll be 15 weeks then so too far long for surgical. I'm very nervous and thought this would be behind me now xx

I’m sorry you are having to wait longer. I remember the feeling of relief when I got a date for the termination. My hospital would not offer a surgical option either so I went through BPAS, have you looked into this option? It was still funded by NHS.

It is a dark time but I promise you’ll get through this xx

Hi All,

just wanted to update as I really appreciate all of your support. My baby girl was born sleeping today and all went well physically with the tfmr. We had alot of time with her afterwards and I just got home from the hospital now. As I live in Ireland I had to wait for second round of cvs to proceed as laws here v.strict. it's been a long road and I feel the grieving will start to begin now.

Thank you for all of your support xx

Sending love OP. I had a cvs in my last pregnancy so understand all these horrible feelings. So sorry for your loss ❤️