CVS Yesterday - Feel emotionally drained

[peelprincess]

After stumbling across the termination thread yesterday, I am so overwhelmed by the wonderful support you show each other on this board. I read through the stories on here last night and did a lot of crying. I am amazed that there are so many of you with similar situations and emotions to what I am going through.

I now feel brave enough to stop hovering and tell my story so far - albeit a short one.

First scan on Monday showed increased fluid around the baby's head and neck (5.5mm)and we were sent up to Fetal Medicine Unit at the specialist hospital yesterday. They did a scan and the fluid is 6.7mm so not looking good. There is also fluid measuring 1.5mm over the heart. The consultants told us they are pretty certain the baby is going to have a serious chromosomal disorder or fatal heart or skeletal problem and there is a very high chance that the baby will die over the next few weeks.

They asked if I wanted to terminate yesterday but I decided to carry on and have the CVS (which both my husband and I previously discussed) as we are just not ready to say goodbye yet. I had the biopsy yesterday afternoon.

We get the initial results on Monday or Tuesday. They said yesterday that if the results come back normal and I want to continue with the pregnancy then I will have to wait until my 20 week scan for the heart and skeletal tests (I am 13 weeks). They did stress that with an NT measurement so high, there was hardly any chance our baby would be ok.

We are both devastated. It's been so hard, seeing the baby moving and with a strong heartbeat on the scans. I feel a total bond already. I am up and down emotionally and feel an enormous sense of guilt over ultimately having to make such a massive decision. I just feel in a way that I need to find out as much information about the baby's condition as possible before I make any decisions. That the baby deserves a chance. Maybe I am just prolonging the agony for us both.

I have a healthy 10 yo dd from a previous relationship and this is mine and my husband's first child. I am 29. My dd knows I am pregnant and she is overjoyed, I cannot tell her anything at the moment - I just dont know what to say.

Thanks for reading and letting me offload.

I'm so sorry you've had such bad news

I had a similar experience at my 12 week scan. The fluid was 6.3mm.
I had another scan at the FMC in Birmingham and they confirmed this measurement and also noted a leaky heart value.

I know just how you feel, I felt emotionally drained too. I was given odds of 1/2 for Downs and 1/5 for Edwards or Pataus.

I want you to know there is hope, my CVS results have just come back completely fine. There is still the heart problem for me to worry over, they are scanning me again at 16 weeks. (2 weeks to wait from now, I'm terrified.)
Seems awful that you have to wait until 20 weeks.

I feel the bond already too, at the scan I could see her waving her hand and sucking her thumb and it makes me cry now thinking about it.

I'll be thinking of you and I really hope things turn out ok.

Hi destruct. Firstly, such good news for the CVS results and I hope you take some comfort in them although I understand your worry for the tests to come.

Maybe, if the tests come back clear for me, they may scan me earlier than 20 weeks, I am not sure. The consultants just seemed so final about the health of the baby even before we have had any results - I felt like screaming that someone should give it a chance, that it deserved for us to at least try and to not give up on it.

It is truly heartbreaking to see the baby in the scan and just adds to the agony of the process. I hope everything goes well for you and try to be kind to yourself over the coming weeks.

I have no experience of anything like this myself, but you and your family are in my thoughts.

Thanks Peel.

I found ARC really helpful www.arc-uk.org/
You can call their advice line for info or just to offload your thoughts and feelings, they are really great.

sorri for your results.

bear in mimnd the limitations of CVS/amnio testing (ask the consutlant about this)

• even if clear you will still need detailed scans to check for other issues, which may point to conditions not able to be tested for on amnio/cvs chromosome testing. 3d/4d scans could be really valuable here.

Peel, fingers crossed you get good news with the test results and try to push for an earlier scan.

Destructo, would a 3D/4D scan help in your case? If you want to look into it I would go with you if R was stuck due to starting new job?

Oh peel - I wish there was some comfort I could offer, but unfortunately I know exactly how you are feeling. The only thing I can advise you to do right now is to fill the time - even if its just watching DVDs (the 24 box sets used up many a waiting hour for us), because you really can't know what to do for the best until you get some test results back. But the waiting is just torture. I remember waiting for my CVS results a year ago and am likely to be doing the same again in a couple of weeks. You'll get the results for T21, T18 and T13 back Monday/Tuesday and then if those are clear they will do a full chromosome check (karyotype) to see if the other chromosomes are ok. That unfortunately takes another couple of weeks to come through. Just try really hard to take one step at a time. If there is a problem, you don't have to rush to decide what to do. And if the chromosomes are ok, you have time to sort out an earlier scan or whatever you need at that point. Be kind to yourself and we'll all be keeping our fingers crossed for some good news. x

I had 5.5mm and CVS came back okay then baby was fine. Go and invest in a box set, like another poster suggested, and kill time.

Take carexx

Thanks everyone for your kind messages and advice. It's very easy to just see the problems without thinking there may be any hope. Hopefully the results will come back clear and then we can look to further testing.

Posie, your story has given me hope when I didn't have any left. Thank you. xx

Well the first initial results have come back clear so now we wait for the full set in 10 days. They have also asked me to go for a detailed anomaly scan and fetal echocardiograph in 7 weeks ( when I'm 20 wks). Has anyone had experience of this? Could I ask for that earlier does anyone know? I just feel like I'm on a bit of a time bomb in case a fatal/serious defect is found.

Princess I am so happy to hear your news that your first results are clear, and I will be sincerely hoping that everything is okay at your 20 weeks scan. I do hope you can take some consolation from these first results, and find the strength to see you through the next 7 weeks.

Thanks And - it is like an emotional rollercoaster. It does feel like a weight has lifted but dont want to get our hope up too much.

I'm so glad to hear your initial results are good.
I have my fetal echo in a couple of weeks, I'll be 16 weeks then so I would have thought that you could have yours earlier than 20 weeks, maybe it depends on the hospital?

I had a fetal cardiac anomaly scan at about 17-18 weeks with dd3. They can certainly look at the heart earlier than 20 weeks. I hope you get good news.

Thanks everyone for your messages and Destruct - hope all your results come through with good news too.

I think, if the full chromosomal tests come back clear, I will try and push for an earlier echo.

Full CVS results have come back clear and its a little girl.

I still feel mixed up about the uncertainty of the baby's health.

I spoke to them about having an earlier echo/anomaly but they said they would still have to do one at 20 weeks to be certain. I am being scanned now in 2 weeks (at 16wks) at my local hospital to check if the baby is still alive.

I'm glad to hear about your CVS results. Mine is a little girl too

I know what you mean about the uncertainty. I want to be happy about my CVS results but I can't celebrate yet, I'm still in this horrible state of limbo wondering whether she'll be ok, wondering what the scan will show and even if she'll still be alive

I'm 16 weeks now, scan was supposed to be today but it has been rescheduled for Monday, so frustrating.

Wishing you the very best of luck, I hope you are coping alright with this awful waiting. I've been going to work, it helps a bit to keep my mind off things but every now and then I have to sneak to the toilets to cry.

Good luck and take care x

Hi destruct just wondering how your scan went?

My community midwife found a heartbeat on the doppler yesterday so that made me feel better but still just waiting....

My scan was amazing.
The cystic hygroma on the back of her neck has shrunk and they can see no structural abnormalities of the heart.

They say I'm not out of the woods yet and they will see more at my 20 week scan but everything is looking more positive.

At my first scan they had said (to my DH when I was out of the room) there was a 75% chance the baby wouldn't survive, so I had been expecting the worst. I'm still a bit stunned to be honest.

I hope you get good results too, I'm glad you're getting a 16 week scan I think I'd have gone insane waiting until 20 weeks.

How long do you have left to wait? Hearing the heartbeat is a good sign, my midwife did mine too, a week before the scan. I nearly didn't ask her to cos I was scared in case she couldn't find it.

Hi destruct and princess can I join you? I'm in the same boat. We saw a cystic hygroma at our scan last Tues and had the cvs on weds. Absolute agony till Fri when the initial results (including for Turners) came back clear. Still waiting for full results. Seeing midwife this afternoon.

I'm 44 so this really is our last shot. We have a beautiful DS already.

Sorry this post is so disjointed. I'm torn between sharing and being frightened to do so. And my fear is making me quite numb (though feel much better not for clear initial results)

Thanks for posting your news, it gives me hope.

Hi witlesssarah, I'm sorry to hear you've had bad news at your scan too.
It's great those initial results are clear, I hope you continue to get good news.

I have 2 DC already and the pregnancies weren't exactly trouble-free but I have never realized how scary being pregnant could be. I'd never heard of cystic hygromas or nuchal fold measurements before, it wasn't even on my radar as something to worry about.

Destruct - oh I am sooo so pleased for you!! Fantastic news!! What a little fighter she is! Fingers crossed you continue to receive good news and please, please let me know how you get on.

Witless Sarah, so sorry to hear that you had that news at your scan. It really is a horrible shock to hear that your baby may be poorly. It's good news that your initial results have come back clear and all I can say is take one step at a time.

It doesn't help in this age that we can google everything and read all sorts of stories which make you feel worse, but please try and remember that your pregnancy is different to anyone elses and no-one can predict the outcome. Just try and be kind to yourself and cross each bridge as it comes.

Please let us know how you get on. This is a brill forum with lots of support and advice.

Destruct - I have my 16 wk scan on Monday - unfortunately, this is at my local hosp and not at the specialist fetal unit but I have been told that if there is any major issue it will be picked up. I am back at the fetal unit at the end of August to have the cardiogram and anomaly scan. We are just trying to stay positive (but not get our hopes up too much) and get back to normality.

Desrtuctogirl, peelprincess,witlesssarah

I've been following your posts and hope that you all continue to get good results.

I've been given in 1 in 3 for Downs, waiting for initial CVS results to come through on Tuesday or Wednesday of next week.

Think its going to be a long weekend

Marie

Good luck peelprincess, I'll be thinking of you tomorrow.
I hope your CVS results are good Arianasmummy, it's horrible waiting for results.

Good luck peelprincess and Arianasmummy, think of you both