Anyone ever had a CVS?

[maisie78]

I have to make a decision about whether or not to have one pretty soon. Our dd was born with a rare genetic disorder. We have been tested and given a 1% chance of it happening again. We have had the gender blood test as this is an x-linked condition and so if baby turns out to be another girl we can opt for a CVS to see if she also has the condition. If it's a boy we just wait and see as if he has the condition he probably wouldn't survive 2nd tri.

I just don't know what to do. I'm not sure the risk is worth it for only a 1% chance of it happening again. And even if I have it done and it's positive I'm sure I wouldn't do anything about it anyway so it would be for information only. Has anyone here had a CVS done? I am about 80/20 convinced I probably won't have it but just struggling with making a definite decision.

 

[nickyb]

Hi, sorry your going through this, I've had two cvs and one amnio in the past, due to a rare chromosome abnormality, I too was given a 1% chance of it happening again! I chose to have the testing done with each pregnancy after that just cos I was so petrified of it happening again.
It's tricky if the results won't effect your decision then u could avoid having to go through the procedure but on the flip side is it better to be prepared? Especially as u said if it's a boy and he has the condition he wouldn't survive...
I needed to know but it's different for each person

 

[Dpopl622]

Hey. I hope you don't mind me joining in. I'm currently 12 weeks and I just had my NT scan. I'm freaking out because the doctor said there's fluid behind the baby's neck and it could possibly have Down syndrome or something worse. I've read up on it and so far I've found if the baby has a nasal bone that is seen on the ultra sound there's no reason for concern. I need help because I'm pretty sure I can see the white line in my ultrasound that would account for the nose bone but I'm not sure. This is my first pregnancy after one miscarriage and I'm terrified. I don't even know how to think clearly right now.

 

[maisie78]

Sorry you are going through this I can understand why you are so worried x I'm afraid I can't provide much help as I haven't actually been through any testing yet. With dd they couldn't get an nt measurement because I am plus size and I refused the blood test. Have you been offered a cvs or amnio?

I hope someone comes along soon who can help xxx

 

[nickyb]

Hey. I hope you don't mind me joining in. I'm currently 12 weeks and I just had my NT scan. I'm freaking out because the doctor said there's fluid behind the baby's neck and it could possibly have Down syndrome or something worse. I've read up on it and so far I've found if the baby has a nasal bone that is seen on the ultra sound there's no reason for concern. I need help because I'm pretty sure I can see the white line in my ultrasound that would account for the nose bone but I'm not sure. This is my first pregnancy after one miscarriage and I'm terrified. I don't even know how to think clearly right now.

Did they tell u what the measurement was? What have they advised u to do?
It's horrendous going through this I know, the only way to be sure would be a cvs or amnio
Good luck and If u need to know anything or just to talk Im here

 

[Dpopl622]

Hey. I hope you don't mind me joining in. I'm currently 12 weeks and I just had my NT scan. I'm freaking out because the doctor said there's fluid behind the baby's neck and it could possibly have Down syndrome or something worse. I've read up on it and so far I've found if the baby has a nasal bone that is seen on the ultra sound there's no reason for concern. I need help because I'm pretty sure I can see the white line in my ultrasound that would account for the nose bone but I'm not sure. This is my first pregnancy after one miscarriage and I'm terrified. I don't even know how to think clearly right now.

Did they tell u what the measurement was? What have they advised u to do?
It's horrendous going through this I know, the only way to be sure would be a cvs or amnio
Good luck and If u need to know anything or just to talk Im here

I called them and asked. They said the nt scan showed a fluid thickening of 6mm. So far my doctor has called the high risk doctors and told them I need to be seen by the end of this week due to me being 12 weeks and you can only get a cvs up to 13 weeks. (From what the doctor told me) my doctor wants them to first due the genetic non invasive blood work which will only give me a ratio not a definite answer. The only definite answer word be the cvs.

I don't want to sound like a bad person but if the baby does have a chromosome abnormality and will need constant care and attention for most of it's life. I think I would have to give adoption a serious thought. I have cystic fibrosis myself so I know the struggles of having a constant medical condition. I feel in my heart the baby would have a much better life with a family who has prepared their hearts to take on a child with medical conditions. I have nothing against children with trisomy conditions I just know a child with constant medical condition will not benefit having a mother with a constant medical condition. I honestly don't know what to think. Am I a bad person for thinking this way?

 

[nickyb]

Of course your not a bad person, your thinking of your child as well, only u know what you can cope with, you have to make decisions based on your own circumstances and your families.
A nuchal that thick could mean heart problems not just chromosome abnormalities
When I had my cvs the first time, my baby's nuchal was 7 and she had a hygroma too.
But there are also cases when it means nothing and baby is perfectly healthy I've heard so many positive outcomes with people recently, so don't give up hope Hun

 

[maisie78]

You're not a bad person for thinking that way. You ate thinking of your baby and giving them the best possible life. We have raised adoption as a possible option here too if this child has disabilities because we already have one disabled child and I am not sure we could cope with 2. I know I could cope with another blind child but if their disability was serious I know I would seriously worry about caring for them whilst not neglecting dd. Whether or not I could actually go through with it is debateable but you are certainly not alone in wondering if it would be for the best.

Like pp I have heard of many positive outcomes. Good luck and please keep us updated with your progress. I'll be thinking of you xx

 

[Dpopl622]

I keep calling my doctors office every day asking if the high risk doctors have called back yet. It's been over 2 weeks since they originally made the referral. I've heard nothing back yet. And I'm worried I'm into my 12th week already and my doctor seemed to strongly suggest I need to have this testing done by the end of this week. Hopefully they'll call me back soon. Thank you guys so much for all your support it means so much to me I start tearing up every time I think about it

 

[steph.]

I haven't had a cvs but had an amnio. The procedure itself was fine, very straight forward, and was over within a couple of minutes. Of course the psychological part of it is much more traumatising. Good luck with whatever you decide, for me not knowing was the worst part so I had to have it done xxx

 

[mum2be257]

I had a cvs as my daughter has Cystic Fibrosis. the procedure was absolutely fine and very quick results x

 

[maisie78]

Thanks for your input ladies. We got our gender results today and are team blue

This means we will not be having further testing. As daughters condition is x-linked in the highly unlikely event that baby has IP he would be unlikely to survive beyond second tri. I don't feel having the cvs is worth the risk to him when he is so unlikely to he affected. Fingers crossed that I have made the right decision xx

 

[steph.]

Congratulations on team blue! I am sure he will be as healthy as can be and soon enough all the worrying will be a distant memory.

 

[Dpopl622]

Update. I had another ultrasound with the high risk doctor. The fluid behind the baby's neck went from 6 mm to 4 mm. They said I'm not out of the woods yet. They viewed the fluid from the top of the baby's head and it showed the baby has a couple cysts in it's neck. He diagnosed it as a cystic hygroma. I was 13wks 2 days at my ultrasound but the baby is measuring 14 weeks. They said that because the baby is measuring larger it is unsafe to do the cvs so I'm scheduled to undergo an amnio in about 7-10 days. I'm hoping and praying for the best and I honestly feel like everything is gonna be okay. the doctor did also say that this finding would suggest more of some type of heart defect. In addition he also did describe the cystic hygroma as small and nothing that looked impressive. I'm holding out hope that everything will be okay but a part of me is still scared. Everything I've looked up said that normally the baby measures small with cystic hygromas and/or chromosome abnormalities. Every ultrasound I've had so far the baby has measured bigger. I know the date of my lmp as it was exactly one month after my miscarriage.

 

[steph.]

Dpopl it's a good sign that the fluid is going down. My dd was born with a cystic hygroma. Hers is on her shoulder so even though it was there at the 13w scan (it can clearly be seen on the 3d scans), it was missed because of the unusual location and not picked up until birth. Even so, she had a 1:20 risk of down's due to my bloods, I had an amnio which came back clear. She had the cystic hygroma injected at 3months and 5months, and now its gone. She's just got some lose skin where it used to be which she will grow into. There are also so many stories where it disappears completely before birth. If you are on facebook there is a cystic hygroma group which you can join and see all the stories.

Keeping everything crossed for you and baby. I'm sure everything will turn out alright xxx

 

[Dpopl622]

I'm hoping so. Thank you so much. It's very encouring to me to know other people have gone through this. I didn't even bother getting the bloodwork because I knew all it would do is make me more nervous if I got a bad reading. I figured it's best to get the amnio done and know instead of worry the next 5-6 months. The doctors scare you more than anything else.

 

[steph.]

Oh I know! When the doctor called me to say my blood work had come back, she sounded so depressed, like my baby was a goner. I asked her if maybe my body could just make wonky bloods and she said "Maybe if they were a little off, but when your bloods are THIS bad it's not good". Just as well she hadn't seen the ch :/

Make sure they do an ultrasound before the amnio , because maybe in 7-10 days the fluid will be gone by then. With everything else looking perfect, your baby has every chance to be ok.

 

[Dpopl622]

Yes I'm going to insist about the ultrasound before the amnio. I'm hoping at the last minute I don't have to get the amnio but id also feel better knowing so I'm kind of torn. I do feel like everything will be okay but I'm still nervous. I also have cystic fibrosis and my boyfriend doesn't have health insurance to find out if he is a carrier. So I'm hoping that this test will let us know if the baby has it too.

 

[steph.]

Let us know how everything goes. I'll keep you and baby in my thoughts!

 

[Dpopl622]

Let us know how everything goes. I'll keep you and baby in my thoughts!

Sorry for not being on here in awhile. I've been going to lots and lots of doctors to find out all these scary risks of problems my baby can have. Then I had the amnio done and had to listen to a whole bunch of risks that could happen just from the amnio. I kept asking the doctors what are the chances the baby could be normal and completely healthy even tho it has a cystic hygroma. They said it is possibly but very unlikely and that it's chances of Down syndrome, tuners syndrome or something else were very high. The amnio went smoothly no complications. A long 3 days later I got the preliminary results back then a week later I got the final results back. Everything is 100% completely normal. I'm carrying a bouncing baby BOY! All his chromosomes are there and the right amount of chromosomes are there. All these long nights of worrying finally came to an end and I can finally enjoy my pregnancy. The doctors said they were really surprised everything is normal! They were very convinced he had something abnormal with him. I just wanted to say how grateful I am for all your support through this difficult time. Hopefully this brings hope to other moms who get an abnormal Nt scan result. It doesn't mean there's something wrong!