Waiting for Amniocentesis - anyone who has had one?

[BananaRaces]

I have been posting about this on my Ante-natal Club page, and the ladies on there have been really lovely. I don't want to keep bringing that thread down, but I do want to keep talking about it, so I thought I would make a thread here - if that makes sense!!

I had a call from the hospital on Thursday saying that the results of the combined screening thingy (bloods and nuchal) were back and the baby is higher risk for Down Syndrome. The odds she gave were 1 in 31. My DH rushed back from London and we went to the hospital to talk through options that afternoon.

I was 13+4 weeks that day, and unfortunately they couldn't squeeze me in for CVS before the 14 week cut-off point. We decided against doing NIFTY/Harmony because it's another screening test, not diagnostic, so the answer wouldn't be 100% and we want to KNOW one way or the other if we have a difficult decision to make. Whatever answer NIFTY gave us, we'd want to do a diagnostic afterwards, so there didn't seem to be much point.

So we're doing Amniocentesis, which they can't do until I am at least 15 weeks. I had a call from the hospital yesterday, to say that they are going to do the Amnio on Tuesday the 1st of September when I will be 16+2 weeks. The waiting is so hard. I'm trying to just take 1 day at a time because that seems to be the only thing that is working.

OK, so, things I need to talk through:

• I am cursed with an eternally-optimistic DH, which is normally lovely but at the moment is making me feel like I can't talk about how I'm feeling too much because he just keeps saying variations of "it'll be fine" and I want to shout "BUT WHAT IF IT ISN'T?!". I feel like I can't get excited about the baby properly, because I'm so worried, and although pretty much everyone knows I'm pregnant (because I am showing), only a handful know about the Amnio and I feel like everyone is more excited than me. Which makes me feel awful.

• Work have very kindly given me the day of the Amnio and the day after off, and I have booked the day after that as leave. So I've got the 1st, 2nd and 3rd off... but not Friday the 4th at the moment because I only have a handful of days leave left this year... Do you think I should take the Friday off as well? Has anyone had Amnio who could tell me - will 2 days afterwards be enough taking it gently, or will I want 3??

• I had a hysteroscopy last year, during which they tried to remove a very large polyp without any anaesthetic. It was horrific, I ended up just sobbing in pain and actually felt a bit traumatised afterwards (I know that sounds overly dramatic, but it was really horrendous). They couldn't do it in the end and I had to have the polyp out under general instead. As a result of this I have a bit of a horror of anything that feels similar and the Amnio is making me worried. I'm worried it'll be very painful, I'm worried I will panic and make the baby distressed (not to mention the whole "what if it makes me miscarry?" thing). Can anyone who has had one reassure me??

Sorry this is SO long. One of these -> for anyone who made it all the way through!!

I'm sorry you're having such a worrying time.

I have had an amnio. The actual procedure is uncomfortable but not painful. I felt a bit cramps for a few hours after but other than that, physically fine.

Emotionally I wasn't able to work. We had 5 soft markers show up on our scan anyway so it was obvious that something very serious was wrong with dd2. I was a bit further along so soft markers easier to pick up.

In the end we got positive results for T18 4 days after the amnio (we were never high risk for t21) and I had a tfmr. T18 is a lethal diagnosis. T21 is not so a positive result may be a harder choice (in that I knew our dd2 would die, for us it was a matter of suffering).

I know a poster called SaggyandLucy has a wonderful dd with Down's syndrome who can give you a bit more advice on what it is to have a baby with T21.

Kitty thank you SO much for making it through my very long post and taking the time to write such a helpful reply.

I'm so glad to hear you didn't find the Amnio physically painful, but sorry to hear what you went through emotionally. That must have been incredibly hard.

On the basis of what you've said I'm going to use my leave to take the Friday off as well. That's the day when we'll probably get the results and I know I'd rather get that phone call at home rather than in work.

I was really worried about amnio and did a week of research before agreeing to it. Good news was it seems the risks of miscarriage were vastly overstated and are based on a study from the 1980s

The actual procedure was fine' not painful at all for me but I did nothing for 2 days even missing sil's wedding for it and then took it easy for another few days. I think I'd definitely take the Friday off.

It is good to think what you would do if the results are positive, once they come back, they tend to see you quickly and that doesn't give much time for thinking or researching. My dd (now 33 weeks pregnant) has T18 and although we were obviously upset, it was good we knew we were on the same page about continuing. (I would disagree t18 is universally lethal although some presentations of it are and it is severely life limiting)

Down syndrome association is good for info on T21. I really hope things go well for you however it works out.

Sorry, you're right Dis, T18 is very life limiting. Our dd2s 'type' was lethal (I'm so used to trying to explain it to people I often generalise and revert to the simple explanation) Much as with T21 there are variations of how it presents in the abnormalities.

This will be something to consider if your amnio comes back positive. We could tell from our scan that dd2s heart and brain defects were so extreme that she would likely have died in utero if not very shortly after birth.

You may need to ask for additional specialist scans to assess if they can tell you some of the difficulties your dc may have if they do have T21. That may help you come to a decision, it may not. Also they often will not be able to give you an idea of cognitive impairment (if any) but I know they may be able to tell you if there are any heart defects that may need operating on etc after birth (if you decide to continue)

Fingers crossed your results are negative, don't forget trisomies are still very uncommon and unlikely.

If your results are positive please just remember to make the decision that is right for you. Everyone's decision is different and for different reasons, you don't need to justify your decision to anyone

(Ps it's good to hear from you disillusioned, I'm glad things are still ok with you x)

Hey OP, and hi Kitty.
I had a cvs, basically the same as an amnio OP, and was back at work on a market stall the next day. I was a bit twingy but just fine. and the procedure is nothing. A dab of local and you're away.
1 in 31 is still fairly good odds against a positive.
And honestly, DS is really not the end of the world. my daughter, and every other small person I know with DS is bloody brilliant, and the apple of everyone's eye.
I fully understand where you are right now, I couldn't dare think of the baby until the results came through, I broke the bond for my own sanity. The best thing you can do is just try to stay calm until the results are in and in the event, that the shock has worn off. Time gives more perspective.
Like I said though, the odds are still in your favour.
If you would like to do some research, the best thing I can suggest is not to surf the Web. its all a bit clinical and out dated.
There is a brilliant Facebook page called Future of Downs. Join up and have a lurk. No need to post, just check it out. It's a great page with mums and dads as members. You'll get a much better view of things.

OP you are more than welcome to PM me with anything you want to say or ask. xx