Fluid build behind babies neck - Fertility Network UK

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Fluid build behind babies neck

Coles2020 profile image
41 Replies

Hi People,

So couple of days ago I had my 12 week pregnancy scan but was devastated to learn that there was a lot of fluid behind babies neck ( 9 mm - should be 1-2 ) suggestive of chromosome problems. As of the large amount they mentioned that nature make takes its course but also very small chance baby could be fine. They were really good and referred to FMU and in the very same day they saw me and confirmed he same issue and that baby had reverse a flow ductus venous suggesting heart problem!! They completed a cvs the same day - took a sample from the placenta for genetic testing.

I’m obviously out of my mind with worry - this baby was our last chance!!

I have been try to find some positive outcomes but not found anything!!

Does anyone have any positives or any further insightful information..

Many Thanks 😊

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Coles2020 profile image
Coles2020
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41 Replies
Corchi profile image
Corchi

I don’t have any advice or similar experience but just wanted to send you prayers and good energy your way. This must be excruciating for you. Hope, prayers and love for you 💕

Coles2020 profile image
Coles2020 in reply toCorchi

Thanks you xx

alittlelife profile image
alittlelife

Hi there,

Sorry to hear about this. It must be incredibly stressful.

I just wanted to share details of a website/charity that can help provide more information and support needed about the various processes involved in these situations.

arc-uk.org

I believe the offices are shut but you can still email to have a call.

I don’t know enough medically about possible outcomes from your specific situation but wanted to send you all the best of wishes and kind thoughts. The screening tests are not diagnostic so hopefully the CVS will give you the clarity you need in the next few days.

Xx

Coles2020 profile image
Coles2020 in reply toalittlelife

Thank you very much Xxx

Coles2020 profile image
Coles2020 in reply toalittlelife

I will definitely explore the above, I’ve seen them mentioned a few times whilst googling like an idiot lol - thanks again xx

alittlelife profile image
alittlelife in reply toColes2020

Wishing you all the best over the next few days. Xx

JoP32 profile image
JoP32

Hi Coles. I’m so sorry you’re going through this. I’ve been there - right there - and it’s awful. I would highly recommend paying for the harmony test - £400 but it will tell you one way or the other. Failing that, go for the amino, it’s way less scary than you imagine it will be. Both will give you answers.

Wishing you all the very best and I hope you get a good outcome. Xxx

Coles2020 profile image
Coles2020 in reply toJoP32

Hi JoP32

Thank you,

They actually completed a cvs that day - taking a sample from the placenta which will give a full genetic profile. Will hopefully get a Result by Wednesday.

They did mention though even if the test shows no genetic abnormalities it could be a cardiac issue as the fluid was very large- so worried out my mind....

I hope you don’t mind me asking but did you have a good outcome!

Thanks for your reply xx

JoP32 profile image
JoP32 in reply toColes2020

Ah, sorry, I didn’t read your post properly 🤦🏽‍♀️

We were in a similar situation- the chromosome issue plus, not a heart problem but instead exceptionally low APT which can cause major problems as (if) the pregnancy progresses.

Unfortunately we did not have the outcome we were hoping for. That doesn’t mean to say you won’t though.

And even with as awful as it was at the time I’m still glad we found out when we did as it would have just got harder & harder the longer we went on.

I will keep everything firmly crossed for you that you get some good news. Let us know how you get on. Will be thinking of you.

Xxx

Coles2020 profile image
Coles2020 in reply toJoP32

Ah bless you - how awful what you went through and how lovely it is of you to offer up hope for me - much appreciated xx

JoP32 profile image
JoP32 in reply toColes2020

There is definitely still hope! You’re not out of the game yet.

I hope Wednesday comes round as soon as it possibly can for you and you get a good outcome.

I really will be thinking of you and keeping everything crossed for you. Xxx

Solly-44 profile image
Solly-44

I’m so sorry you’re going through this. Will be thinking of you and your babe - I really hope everything works out well for you xx

Coles2020 profile image
Coles2020 in reply toSolly-44

Thank you lovely xx

Cinderella5 profile image
Cinderella5

Oh I'm so sorry to read your post!! I cant offer any advice but just wanted to say I'm thinking of you at this difficult time.xxx

Coles2020 profile image
Coles2020 in reply toCinderella5

Thank you 💕

KiboXX profile image
KiboXX

I’m so sorry you’re having such a worrying time Coles. Really hope you get some positive news and sending you some big hugs xxx

Coles2020 profile image
Coles2020 in reply toKiboXX

Thank you lovely x

Chowlady14 profile image
Chowlady14

I’m sorry to hear you are having to go through this. I can’t imagine how you are feeling. Sending you love and prayers of a positive outcome xxx

Coles2020 profile image
Coles2020 in reply toChowlady14

Thank you 🙏 Hun xxx

Kurstx profile image
Kurstx

Hi sorry your having to go through this worrying time. Thinking of you and I hope everything works out well ❤️❤️ xxx

Coles2020 profile image
Coles2020 in reply toKurstx

Thank you hun xxx

Peanutchips profile image
Peanutchips

Sending lots of love at this difficult time, hope you get the positive answers and outcome you need very soon 💕

Coles2020 profile image
Coles2020 in reply toPeanutchips

Thank you xxx

Hope4040 profile image
Hope4040

I’m keeping everything crossed for you. I can’t imagine how you must be feeling at the moment. Xxx

Coles2020 profile image
Coles2020 in reply toHope4040

Thank you Xxxx

ancde profile image
ancde

Fetal medicine are amazing. I'm under them for baby enlarged brain ventricles, am 22 weeks. They will look after you well, you are in control, they won't force you into anything. All decisions are yours to make.

Beechnut1 profile image
Beechnut1 in reply toancde

Sorry to jump on the post. My baby was diagnosed with the same. Feel free to PM me if you would like to hear our story. I found it hard to find positive stories when I was going through this 💕

Coles2020 profile image
Coles2020 in reply toBeechnut1

Thank will add you xxx

CAS2 profile image
CAS2

I went through something similar and was able to find stories where it cleared up on its own and where the baby was fine. These cases can be quite rare and we didn’t get the outcome we wanted. Our baby had Down syndrome and severe hydrops not compatible with life.

I sincerely hope you have a better outcome. The fetal med team will look after you.

Thinking of you xxx

Coles2020 profile image
Coles2020 in reply toCAS2

Thanks hun and I’m really sorry with the outcome of ur baby - thank you for sharing hun xxx

Beechnut1 profile image
Beechnut1

I just can’t scroll past this post. I’m so sorry you are experiencing this, the worry and heartache you must be feeling. They found fluid in my baby’s brain at the 20 week scan and I was pretty much told I’d have a baby with severe disabilities, I had to have an amino, fetal MRI the works. It was one of the most difficult experiences of my life. Luckily all results came back normal and I was very closely monitored in pregnancy. When baby was born he had to have lots of tests done. The long and short of it is I have a completely healthy baby boy with no issues at all. I know your situation is different but I just wanted to send you some love and hope. I found the whole experience made me love my baby more as I made peace that the ‘normal’ I had in my head might not be. Thankfully it was and it is.

Huge huge amounts of love to you 💕💕💕💕

Coles2020 profile image
Coles2020 in reply toBeechnut1

Thank you for your story - just want to know that miracles happen at this point - will update you how baby and I get on - xxx

Rainbowhope profile image
Rainbowhope

Hi sweets. I'm so sorry that tour experiencing this. I have no advice but I wanted to send you love and positive vibes. You and your baby will be in my prayers. Xxxx

Coles2020 profile image
Coles2020 in reply toRainbowhope

Thank you hun xxx

Abbyoj profile image
Abbyoj

So sorry about this news.will be praying for a miracle for you

Coles2020 profile image
Coles2020

Just an update people: so I had some of the genetic profiling back and my baby does not have downs, Turners, Patau or Edwards syndrome so feeling slightly better. However the team feel very high risk of cardiac abnormalities so will have extensive testing with FMU. I also got to find out that the baby is a boy!!!

Thank you for all your kind words and I wish you all the very luck on your own journeys....

KiboXX profile image
KiboXX in reply toColes2020

So happy to read this Coles, hoping you get more good news in the weeks to come xx

Cinderella5 profile image
Cinderella5 in reply toColes2020

Awww Im pleased to hear that you have had some good news and been able to rule out some of the serious conditions, I hope it continues!! All the best.xx

alittlelife profile image
alittlelife in reply toColes2020

Congratulations on finding out you have a little boy! I’m really so relieved for you that those tests came back negative. It must have been a hugely stressful week. I know there are obviously still other uncertainties and areas of concern regarding the heart but it sounds like you are in the best capable hands with the FMU and they are on top of things from an early stage. Wishing you all the best for the rest of your pregnancy xx

Corchi profile image
Corchi

Great news! Keep us posted!!!

Beechnut1 profile image
Beechnut1

So pleased you’ve had some good news 💕💕💕

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