Cystic Hygromas measuring 4.4 and CVS

[mumofone1]

Hello all
I am new to this site and came across it whist searching over the internet trying to get some answers.
I am nearly 14 weeks pregnant and went for my routine scan a week ago to be told that my baby had an increased nuchal that was examined further to find cystic hygromas measuring 4.4 and I was subsequently told that I only had a 1 in 4 chance that my baby would be ok. I was devastated - my husband and I are 28 and after my son being very poorly at birth with Group B Strep and having the very difficult time that followed, I was sure that this baby was going to be easy.
I was advised to have a CVS as it was thought that it would most likely be a chomosome abnormality. It was prolonged and absolute agony as my placenta is against the back wall and was very hard to get to.
Anyway the preliminary results came back yesterday and confirmed that my baby girl did not have pataus, edwards or downs but that it could still have masaicism and other fatal abnormalities and so I have an agonising further 2 week wait whilst they check all the other chomosomes. I don't really know whay I am posting other that to hear of anyone else's stories. Has anyone else had a baby or know anyone with a baby with cystic hygramas? Seen a lot about increased nuchal but not much about cysts. My midwife was very bleak and said that she never had a case of cystic hygromas with a positive outcome. Does anyone have or know about mosaic turners? I saw a private consultant who said looking at the baby that in his expert opion it was a mosaic turners and there was a leaky heart value (regurgitation on tricuspid doppler) or something. Has anyone had a baby with a leaky heart value that has been ok? I just have so many questions and would love to hear from anyone who has the time to be able to reply.
Thankyou.

My 12 week scan had similar results. Cystic Hygroma measuring 6.3mm.
They thought I had about a 20% chance of baby being ok. Also had slight tricuspid regurgitation picked up.

I had the CVS too, a lot easier than yours I was lucky having the placenta right at the front. Sounds awful having it done with the placenta at the back

All CVS results came back clear, I've had about 3 heart scans all with no problems. Cystic Hygroma has shrunk and has nearly gone now.

They still think there may be heart issues that can't be seen on the scan, but everything is very positive now.

It's great your preliminary results came back clear. Keep your hopes up, I know how awful this waiting bit is. Your midwife was very doom and gloom but I did a lot of googling there are a lot of stories out there where cystic hygromas have just shrunk and baby was fine.

I really hope things go well, I will be thinking of you x

I can't tell you how grateful I am to you for your response. So pleased to hear that your story is so positive.
I was wondering if you would mind telling me how far gone you are now and what kind of montoring they are doing? When did they start checking the heart in more detail? My NHS hospital will not start checking the heart til 20 weeks - it was only the private person who looked at that and identified the regurgitation. Were you never in any doubt to continue with the pregnancy? When did you start to see the hygromas decreasing? Do you know what you're having? Sorry for all the questions - tell me to mind my own if you like - i'm just so pleased to hear from someone who has had such a similar experience. So nice to feel that there is a chance of hope and some light at the end of the tunnel. Thankyou x

I am 31 weeks now and having a little girl found out the sex from the chromosome tests.
I'm classed as high-risk now and have to see a consultant for check-ups as well as my normal midwife.

I think I am very lucky with the area I live in, I got the first heart check-up (fetal echocardiogram) at 16 weeks at the Fetal Medicine Centre in Birmingham. This was on NHS. I've heard other people had to wait until 20 weeks too.
The CH had started to shrink on the 16 week scan.

I was terrified of having to choose whether to continue with the pregnancy. I really didn't want to have to choose, and I'm glad I didn't have to. My heart really goes out to those who have had to make this difficult decision.

I'm discharged from the FMC now, after 3 scans they found no heart trouble, had my anomaly scan there too and it was fine.
I have to have growth scans now at my local hospital every 2 weeks.

They say everything is fine now but baby will have her heart checked when she's born.
I'm still full of anxiety though, I don't think that will go away easily.

Ask all the questions you like, it's ok

Thank so so much!! I too am having a girl - I don't know if it's just coincidental but most of the stories similar to ours that i've read have been concerning baby girls. I am quite near to Birmingham - my CVS was sent off there from Newcastle Under Lyme so hopefully I too can be referred so they can monitor the heart at 16 weeks at the FMC. I remain hopeful that the CH will start to shrink too - I've heard that it is very bad news if it starts to get bigger. Is this your first child? Will they induce you early or just wait for you to go into labour naturally? I so hope that the next 9 weeks fly bye for you :)

I hope you get in to Birmingham. They are completely brilliant.
If they had found heart trouble, I would probably have had to go there to have the baby. I wasn't keen on this because it's quite far and I was imagining trying to get there in rush hour while in labour. Although now I don't have to go there anymore I am missing it, they were so kind and thorough and filled me with confidence. My local hospital are a bit slap-dash in comparison.

This is my 3rd DC, although I have a 9 year gap since the last one so it feels like my first because I have forgot everything.

I'm waiting for natural labour, they've not said anything about how the birth will go except that baby gets her heart checked afterwards.

Hi a friend had a cystic hygroma measuring 3.4 indentified at her 12 week scan. She was told by the sonographer that the prognosis was extremely poor and to expect to the lose the baby.

That baby is now a healthy 3 year old.

Wishing you well.

Destructogirl - Thanks so much again for sharing your experience. I will definitely ask at my next scan on Monday if there is any change in the size if the CH and if they can refer me to birmingham to monitor the heart. Do you remember how early you started feeling your little girl move? I seem to be very aware of her prods and movements already.

Nancydrewrocked - Thankyou too for telling me about your friend - I know I need to be aware of those stories without happy endings, in order to prepare myself, but at the same time it is lovely to hear about the babes who defied the odds and went on to live happy lives.

Here's to further positive results from the rest of the CVS tests.

Thanks again :)

That's lovely that you can feel her already. I had nothing, barely a twitch until past 20 weeks, I was getting really upset. My first DD I felt her at 18 weeks, my DS at about 16 so I was expecting movement early.

Luckily I got info (from mumsnet, not my midwife who doesn't really tell me much) that as I have an anterior (front) placenta, this means it's normal to not feel anything until quite late. the placenta has been cushioning all her kicks. You have the opposite with yours round the back so you get lots of lovely early kicks

I did a lot of googling while I was waiting for the results. Alternating between reading happy success stories and sad stories where the baby didn't make it. I wasn't sure whether it was best to try to keep thinking positive or to mentally prepare myself for the worst.

Good luck with your scan on Monday, I will be thinking of you x

Hi, hope you're well. Just a note to say that the full karotype chromosome check came back normal meaning i'm told i've now got a 50 50 chance of having a normal babe. The bad news is, however, that I have an amniotic band which is rare and that i've read can have horrible consequences. As with everything else though it is a waiting and watching game, at the moment it is not attached to the baby and it could resolve itself so that's the positive. I've also read though that a cvs can cause an amniotic band so feel bad about that too. Oh well, new scan on Monday so we'll see...

Hi, I've only just seen your reply, i hope you're doing ok.
I'd never heard of amniotic band before, just had a quick google and it does sound scary, i hope your more recent scan has been good and that you and you're baby girl are doing ok. i read that 70% of these are gone by the next ultrasound.