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
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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 💕
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.
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.
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
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!
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.
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.
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 💕
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.
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.
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
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....
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
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
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