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Antenatal tests

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Original poster

6mm nuchal and hydrops

39 replies

manitz · 04/10/2010 17:16

has anyone got any experience of this? just got back from my scan and am waiting for the consultant to call tomorrow. i am 12+2, i have no idea what we will do but i would like to know if this is 100% a problem or just an indicator and the baby could be alright.

Thanks

OP posts:

DuelingFanjo · 04/10/2010 17:19

Hi there Manitz. Did they take bloods too or was this just a measurement taken at your NHS 12 week scan?

Original poster

manitz · 04/10/2010 17:25

I have just realised that in all the fuss they forgot to send me for bloods. I'm really annoyed because it will take a while to get the results in, maybe i'll force myself on them tomorrow anyway.

OP posts:

bigstripeytiger · 04/10/2010 17:30

If it is NHS then they might not have planned on doing bloods, it might just be the measurement.

ProfessorLaytonIsMyLoveSlave · 04/10/2010 17:34

Absolutely could be all right -- I've seen posters on here with results like that where the baby has been fine. But it is a very high risk result.

nancydrewrocked · 04/10/2010 17:37

Hi Manitz so sorry you are going through this. My DS2 was diagnosed with hydrops at 22 weeks, he also had a nuchal fold at that stage which was described as "manifestly excessive" I am sorry but I cannot recollect the exact measurement, if indeed we were ever told - it was all a bit of a blur.

We later discovered that the hydrops was a symptom of Downs syndrome and DS2 later still stillborn.

We were advised due to the severity of the hydrops (which is just a way of saying fluid on more than one of the vital organs) that the condition was fatal, which of course sadly proved to be the case for us.

My understanding from the numerous consultations we had is that hydrops can occassionally be treated but usually only if it occurs later in the pregnancy. Sadly it is almost inevitably an indicator that there is some serious underlying cause.

I am so sorry that you are going through this and hope your consultant can provide you with a clearer picture tomorrow.

ProfessorLaytonIsMyLoveSlave · 04/10/2010 17:41

Do a search for posts by peelprincess (had 6.7mm NT along with 1mm fluid on babies stomach at 12 wks, but CVS and subsequent scans have shown no chromosome issues, fluid gradually decreasing with each scan and apparently normal baby) and ClareZee (again, had 6.7mm NT, and CVS came back clear).

nancydrewrocked · 04/10/2010 17:42

Please accept my apologies if my previous post sounds unecessarily brutal.

I was in exactly the position you are in, trawling the internet for advice on fetal hydrops after it was diagnosed at our scan and indeed posting on another parenting site begging for answers or others experiences.

hard as it was to read the advice I got I did appreciate getting some answers from strangers that my consultant (at that time) was reluctant to give.

Original poster

manitz · 04/10/2010 17:42

Thanks very much for all your answers. i got the impression that this was unlikely to be good news. I had a termination in 07 at 26 weeks because of a hypoplastic right heart, really gutted to be in a similar position again.

Has anyone got any idea what this could indicate other than downs? My baby's nose bone is fine. i'm wondering about spina bifida. thanks

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ProfessorLaytonIsMyLoveSlave · 04/10/2010 17:47

Peelprincess's original thread here -- hydrops plus NT measurement led consultants to tell her that the baby almost certainly had a major chromosomal/heart/skeletal problem and would be unlikely to survive to birth, and they were so sure that was offered a termination without even progressing to CVS if she wanted. But CVS showed no chromosomal issues, anomaly scan showed no skeletal issues, and cardiac scan showed no heart issues, so ten weeks after original NT scan she was told to go away and enjoy the rest of her pregnancy.

nancydrewrocked · 04/10/2010 17:50

I can only say from my own experience that originally the drs were looking for "any chromosomal abnormality" and for a good while were focussing on Edwards syndrome until we got a definitive diagnosis via a later CVS.

I don't know about Spina Bifida specifically sorry.

VictoriasLittleKnownSecret · 04/10/2010 17:53

Hydrops and raised nuchal can indicate heart problems. I'm sorry.

They can also resolve spontaneously and be nothing.

Horrible time for you and you have my utmost sympathy

Original poster

manitz · 04/10/2010 18:09

Thanks. I thought of Edwards and heart problems. Peelprincess had fantastic news. I am so scared of getting that far along (anomoly scan and finding a problem). I really want to avoid a termination so late again. The waiting is truly awful I forgot how worrying pregnancy is.

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Original poster

manitz · 04/10/2010 18:18

Nancydrewrocked. sorry i have just read your messages a bit more carefully. I'm really sorry for your experience, i didn't mean to be dismissive but have been flicking between google and here and missed your first post.

I don't think you were brutal. I need to know the odds at the moment and the sonographer really didn't tell me anything so i need to know what I'm considering at the moment. I'm going to focus on the worst for now as thats kind of how i work.

I've got to go now as there's a digger trying to drive across the keyboard (courtesy of ds!) will come back on when he's in bed. Thanks again for all your experiences. x

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nancydrewrocked · 04/10/2010 18:19

Manitz I really feel for you, especially after losing a baby in 07. Sometimes life is just rubbish (which I realise is to grossly underestimate the position)

Having lost DS2 last year I am now in the position of being pregnant and waiting for a cardio scan at the end of this month as when I was scanned at my CVS I had a NT measurement of 3.4 (although no chromosomal issues subsequently detected).

I am hoping you have good news and can join us here if you fancy it.

nancydrewrocked · 04/10/2010 18:22

Xpost there - you weren't dismissive at all and TBH you are entitled to be at the moment even if you were.

I remember vividly how hard it was looking for answers (we were overseas when we got the diagnosis and so no professional advice to be had until we returned to UK) and google becomes your best friend and worst enemy rolled into one.

DuelingFanjo · 04/10/2010 19:05

Hi there

My SIL had a very high nuchal measurement at her NHS scan. Her private scan a few days later (Which was the proper nuchal test with the bloods) came back fine.

The NHS shouldn't be measuring the Nuchal fold in isolation and not if they are inadequately trained.

Original poster

manitz · 04/10/2010 20:55

df, thanks for that but they should have done my bloods and forgot. i'm going in tomorrow to get them done asap. apparently i should of realised to get them even though they forgot (dontcha just love it). me and dh were intrigued by your name btw.

ndr, so you only lost your ds recently then, it must be raw especially with your first pg after. i got really complacent with this one as i had a healthy ds in 08 a year after my termination. all i thought was about missed miscarriage, as my previous baby's heart problem wasn't a chromosone thing i thought i wouldn't have anything like that and i kind of thought i'd had my bad luck. However i am very lucky and have 3 healthy live kids, i am just being greedy wanting another but i loved seeing the baby on the scan until she told me she was gonna do an internal scan and started ringing my alarm bells. I hope this pg works out for you.

I have just noticed on the scan notes that the baby has a cystic hygroma. I have googled and it looks like turners to me.

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nancydrewrocked · 04/10/2010 21:16

Manitz thanks for your best wishes - you are certainly not selfish for wanting another child, I have two healthy children for which I am eternally grateful but it doesn't take away or change the pain of losing a baby.

I lost my DS2 (he was my third) in August last year. I think about him all the time but it is not as raw, time has helped .

I was also so complacent with my third: sailed through the 12 weeks and the anomoly scan and then wham: hit me like a brick.

Like you faced with this fourth baby I thought I'd had my bad luck - especially with them being able to rule out Downs.

Anyway enough about me.

Try and stay away from google - it can scare the sh!t out of you - especially re the hydrops. Hopefully this time tomorrow you'll have some answers.

Original poster

manitz · 04/10/2010 22:10

hi nancy, i just looked at your thread and it's just what i need but not at the moment. I think this is it for this pg tbh. will find out more in the next few days...

...but i have already been thinking about when we can conceive again. the hormones sending me mad i think.

i lost dd3 but then had ds a year later. a word of warning - i had a small amount of pnd which i think was because i invested too much emotionally in the baby. I kind of thought he would be her if that makes sense. anyway it was very minor and i love him dearly but just had a bit of a downer and it was unexpected.

Thank you for all the information on this thread. It has helped me firm up what I want to do in whatever situation plus what questions i need to ask when i finally get to see the consultant. no more googling for me now. bed. x

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nancydrewrocked · 06/10/2010 10:42

manitz thinking about you today - hope you have managed to get some more info from your Dr.

Original poster

manitz · 06/10/2010 20:44

hi, ndr. i went to get those bloods done and managed to get a chat with the consultant at the same time. he confirmed that there is very little chance of the baby even being born alive (it seems this is the hydrops rather than the nuchal measurement). I had that impression also.

I feel that even if the cvs comes in clear I'm likely to terminate this pregnancy. I simply can't run the risk of a late miscarriage or late termination like last time. he said i'm around 5% likely to have a healthy baby and 90% likely for the baby to die in utero. Its just about the numbers at this stage for me.

I want the termination to be soon as possible b4 i can bond more and feel it kick. However he persuaded me to have cvs and i think this gives me time to check that things are as bad as they seem, it will be at a different hosp so i can get a second opinion which will also be good.

i will get results next tuesday i hope. Thanks for thinking about me. I am ok, i just feel quite angry. x

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VictoriasLittleKnownSecret · 06/10/2010 21:08

Anger is often extreme sadness. You are understandably feeling both emotions I imagine. Manitz this is a horrible horrible time and so unfair. I'm thinking of you.

peelprincess · 07/10/2010 13:40

Manitz, hope you've read my post. Please, please please dont be convinced that your baby is not going to be born. I was told EXACTLY the same (even though they are trying to deny that now). I was firstly told that because my baby had fluid on her heart - she would die before 16 weeks due to the impact of it. I know that is is sooooo hard to be positive but dont think that you have no hope until you are told for definite that your baby will not survive etc.

I am now 25 weeks pregnant and have been through a mill of emotions and been told all sorts of things from "you dont even have a 'X'% chance of your baby being born healthy to 5 weeks ago when we were told - everything is fine, go and enjoy your pregnancy. I have had CVS, 5 ultrasounds and have still at least another 2 scans left to go.

I had a meeting two weeks ago with my consultant and he said that the NT measurement is only a marker and they should never use it in isolation. It is an indication that there MIGHT be another problem, but as someone who has been through the cardiograms, the detailed anomoly, it is not always the case. The NT and fluid on my baby's heart/neck had virtually disappeared by 16 weeks.

Please dont give up hope x

Original poster

manitz · 07/10/2010 16:08

Hi peelprincess
I read your thread and it was uplifting. I am so pleased for you that things are turning out well and I shall continue to follow your progress and keep my fingers crossed for you.

In another life i would do exactly as you have but with my medical history I don't believe that is a possibility for me. I have to make a choice now that is based on statistics as I can't mentally face a termination later in my pregnancy. And physically it would preclude any chance of further pregnancies. Its so horrible but its all guesswork at this point and I don't know what the future holds, i just know what i can cope with (or not).

I had my cvs today which was uneventful - apart from sobbing all the way through and most of the way home. The nuchal has gone up to 7mm and the hydrops is now around the whole body as well as head. I dont know what this indicates if it indicates anything. She wrote coarctation of the aorta on my report but didn't discuss this with me. Results are in on Tuesday/Wednesday. x

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witlesssarah · 07/10/2010 20:32

Dear manitz, I've been reluctant to write here, but just to let you know I know the despair you're feeling. Do hold on to what hope you can and take what kindness you can. I can't say its all better 8 weeks later, but I have survived, and you know from your history that you will too. I'm thinking of you.

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