Waiting for CVS results and terrified of what lies ahead

[Sunshine28]

I had my CVS yesterday following a 1:3 chance of downs syndrome (nuchal fluid has gone from 3.5mm to 4.8mm). The baby has soft markers too including no nasal bone and reverse blood flow in liver. Before CVS, the cardiologist came in to have a look and said that although baby has all four chambers of the heart, it has some fluid around lungs and heart.

I am slowly coming to terms with what is likely to happen - For our own reasons, I am pretty sure that we would not be able to go through the pregnancy if the baby has Downs. This would mean getting a termination at about 15 weeks. I am petrified about the physicalities of this as have found out that I will need to be awake during the whole procedure.

Does anyone have any experiences or advice they can offer?

Hi sunshine so sorry that you find yourself in this horrible situation.

We had a 'high' risk of DS as well, although lower than yours, and we also took the horribly difficult decision that if the results of our amnio were positive we would not continue with the pregnancy. Even coming to that decision is so hard. You poor thing.

1:3 must feel very, very frightening, but it does mean you have a 66.6% chance that your baby does not have DS. I know the wait is so hard. I hope that it passes quickly for you. Mindless TV is good, I found.

We were lucky and our amnio result was clear, but we have had to terminate a previous pregnancy at 22 weeks due to a heart defect. I do think it varies from place to place, so my experience is only of here. When we were discussing the potential need for a termination this time with our consultant, he said that there was a clinic that he could refer me to for a 'medical' termination until 16 weeks (this is when you have a general anesthetic and the procedure takes place while you are under). Perhaps it would be worth you exploring the possibility of this where you are, if you need to. It wasn't automatically offered here, I had to ask for it.

I just typed out a paragraph about my experience of the termination at 22 weeks, and then read it back and worried that it would just give you more to worry about. I was more preg so that might make a big difference, someone else might be along who can give you more useful information. I am happy to share with you if you really want, but don't want to add to your worries! Suffice to say, that I didn't find it too bad and infact gained a large amount of feeling that I had done the best I could by our baby and that we had gone full circle with the whole experience.

Thinking of you at this so, so difficult time.

sunshine, so sorry that this is happening to you.

I had similar results from my nuchal scan in July (Only my risk was 1:2 and my nuchal measurement was higher. Of course there is the chance that everything will be ok I have read about experiences where it does but it is understandable that you want to plan and get your head around the next stage.

I did get bad news and had a surgical termination under GA I was 13 weeks 6 days. The doctor did say there was a possibility of referring me to a private hospital (paid for by the NHS) if they couldn't fit me in at my local hospital. This was at a British Pregnancy Advisory Service hospital.

Thinking of you over the next few days.

Hi Sunshine,

sorry you've had such worrying results, and I hope that you end up as one of the 2 in 3 for whom things are fine. Sadly I've recently been through a termination at 15 weeks. We discovered that our daughter Rosie had another chromosomal problem with very little chance of live birth and took the decision to to terminate after nuchal scan and CVS.

When we had the CVS I thought for sure I would want a surgical termination (where you're out) and wasn't sure I wanted to know the sex etc. I really wanted it just not to be happening and the less I had to engage with it the better. My NHS hospital told me that if I wanted that they could refer me to a private service, but they could only offer medical termination - where you go through labour.

Looking back now I am really glad that I went through labour (and found out the sex, named her and had a funeral) all of these things have made the experience more concrete, so while its still unbearably sad (7 weeks on) its not a bad dream, its a real tragedy that happened to our family.

I do hope that your fears don't come to pass, but if they do be as gentle as possible on yourself, I took four weeks off work and everyone was completely understanding. It is the hardest thing I have ever had to live through.

Also come join us on the 'support thread for women who have chosen to terminate for abnormalities' (sorry I can't work out links to threads) we're a bit quiet now, but there's plenty of support from a wonderful group of women who know what you're going through

Finally, do get in touch with ARC (antenatal results and choices) www.arc-uk.org/ Again its a great group run by people who have been through it all, they can offer information, advice and a sense that you aren't alone

Hi all - thank you so much for your kind and comforting replies. I will definitely contact Arc at some point over the next couple of days. Thanks again

HI Sunshine, thinking of you over the weekend, I found that bit of the wait the hardest, or if you get your results today I hope they are good. Either way remember we're here for you

Thanks for your message witlesssarah. We got the results last night and sadly our poor baby does have Downs (and very likely to have heart problems). I am booked into hospital for Sunday. The doctors were reassuring but I am extremely apprehensive about the whole thing, especially as this will be my first 'labour'.....Again, I know there is probably not much advice anyone can give as it is just something that we will have to go through, however if there is anything you can think of, please let me know......Like you witlesssrah, I would like to name the baby and have a service afterwards.....

Oh Sunshine, I'm so sorry. You will have been through it by now and all I can say is I hope you had good support. It does get easier though it doesn't get less sad. PLease remember the support thread is there as well and my thoughts are with you

Oh Sunshine - I'm so sorry to hear your news and sorry I didn't see it earlier so I could have shared some experience of what you went through yesterday.

As Sarah says, it will get easier, but maybe not for a little while. I went through exactly the same as you last summer and I do remember it well. Those first few days were just numb - I didn't really cry, I just didn't really do or feel anything. It had all just gone so quickly. One minute excitedly heading to the scan, then a week later coming home not pregnant at all. I actually went back to work the Tuesday after coming out of the hospital on the Saturday. Don't think that was necessarily the right decision, but I just couldn't bear being at home staring out of the window on my own. Somehow at least staring at my office wall felt like a bit of a step forward and I could distract myself with colleagues around.

The best advice I think I can give you is to take things very gently. Nothing fast or loud or busy for a little while. And be kind to yourself - you made the best decision for you and your family. I can honestly say that I've never regretted my decision. And there is some future hope - I'm now pregnant again (22 weeks) and this one is doing well. Being pregnant with a baby without Downs Syndrome has just made me more sure of the decision I made last year.

In the meantime, take one step at a time and distract yourself as much as possible to help some time pass. Sounds crap, but DVD box-sets were an essential. An hour, a day, then a week at a time - time will pass and things will gradually start to get easier. Sometimes steps will be forwards, sometimes back - that's all ok. The support thread Sarah recommended would be a good place to help you get that reassurance. Take care. xx

Thanks girls - I have had a quick look on the support thread you have both recommended and will definitely start posting once I have done a bit of 'lurking about.'

Yesterday was indeed an experience. Actually giving birth, physically, was probably less painful than I expected. However as the placenta was still not coming away after 7 hours (and an injection and pills) I had to go into theatre to get it removed - this wasn't so bad, but just meant that me and my wonderful support team (my partner and mum) were extremely exhausted. Am just so glad to be at home this eve but am feeling very empty and sad for my baby boy. I know time will heal and I can only thank you for your advice xxx

Oh and Littlpoot - congrats on your current pregnancy :)

Good to hear from you Sunshine, and sorry it was such a hard experience. It sounds like you have really good RL support, which makes all the difference. It is a terribly sad time, and I found that becoming aware of the love and care that others have for me was the only glimmer of light in it. Always here when you need to chat.

Thanks Sarah xx

Sunshine, I am sorry I have just seen your thread. I am/was a regular on the support thread, having lost my baby girl in February at 22 weeks. The support thread has been very quiet lately, but don't hesitate to post if you need a hand. Or if not you can continue posting in here and I'm sure more people with simalar experiennces will come along.

Time will indeed heal - sometimes a long time, but each stage has its purpose, although this is such a terribly painful journey. You are not alone though, and this is what I found so helpful in the early days. I found being in RL isolating, whereas the ladies in here have supported me and guided me through those first very dark weeks/months.

As Little Poot said, just be gentle with yourself and don't expect too much of yourself at the moment. Anything that helps you get through the days is good. Thinking of you xxxx

PS: Sarah, I hope you are ok. x