Apologies in advance - this has turned into a massive post.
So, the latest update in our crazy rollercoaster journey. Had another scan with the specialist consultant at George’s yesterday and still don’t have a straight answer. It’s particularly hard because DH and I seem to have heard different things in the appointment – or come to different conclusions.
She agreed with the other consultant at our last appointment that the baby now ‘appears normal’. There’s a slight enlargement of one of the posterior horns of the lateral ventricle, but it’s just within the norm (9.6), so without the other issues wouldn’t be a red flag. There aren’t any other physical issues and all is within normal measurements.
However, where the local consultant was really positive that the array CGH came back negative, yesterday’s consultant seemed to dismiss this and said “there are lots of serious conditions that won’t be picked up by that test”. She was also really insistent that just because things look normal now, that doesn’t mean that the odd way they’ve developed hasn’t caused problems.
We’ve been booked in for a fetal MRI in two weeks, when I’ll be a day short of 23 weeks, and she’s said that there are things that may pick up that wouldn’t be shown on an ultrasound – and that some of those things could be serious eg cause major learning difficulties. But, she didn’t explain what those ‘things’ might be eg names of condition. I found it hard to quiz her on this while I was lying down being scanned with everyone talking over the top of me.
DH came out of all this with a relatively positive view point – that the scan appeared normal and that the MRI would give us further reassurance and just rule out a last few possibilities. This is pretty much what our local consultant said a couple of weeks ago.
However, I’ve understood it that there could still be serious problems picked up by the MRI and we could still be looking at the worst outcome. Doesn’t help that they keep proudly giving us pictures from each scan – which I really don’t want if it’s going to end badly. Then I feel shit for stuffing them at the bottom of a drawer (and DH shouted at me for screwing one up when I was particularly furious).
Anyway, had a massive row with DH about it last night, as I’m really angry that nobody seems to be prepared to give us a straight answer so we still can’t make a decision to ‘be pregnant’ or move on. It’s stupid little things that are driving me mad, like not being able to book a summer holiday as I don’t know if I’ll be limited to the UK or not. I still haven’t told most people (including my mum) that I’m pregnant as I couldn’t bear having to tell them if we have to terminate. DH’s helpful response was why don’t we just opt out and decide to terminate if I feel like that – but I don’t feel we’ve got enough information to make that decision.
So today I’ve cried down the phone to the specialist midwife in the hope that someone could talk me through whether I’m right or DH is right, or at least explain properly why the two consultants seem to disagree and which one is ‘right’. Of course, it turns out this can’t be done over the phone – so have another appointment next week, but it is with the head honcho of the FMU at Georges – Professor someone. I think we need to write down our list of questions, so we don’t get sidetracked. Anyone have any ideas what we should be asking and how to phrase it?
Sorry I’ve gone on so long – it really does help to write it all down.