Sunday, May 31, 2015


Someone once told me that their overriding experience of pregnancy was going hither and yon with a handbag full of wee, ready to give to whoever asked for it next.

At the moment I'd say there are quite a few things registering rather more strongly on my radar, but I couldn't go so far as to say she was wrong.

Certainly the approach to wee seems to be quite different when it comes to obstetrics, compared to any other department I've dealt with. In obstetrics, it's all about the wee. Seriously. You must turn up to every appointment with a urine sample, or a full bladder, or both. I have an appointment coming up to discuss birth options with my consultant, but I had to contact the hospital to find out what the appointment was for and who it was with, because the only details anyone saw fit to include in the appointment letter were the time/date/location and the necessity of bringing wee. I'm not even sure why wee would be relevant to that appointment. Maybe it's just a standard line on their appointment letter template.

The response to a sample is different too. In other departments, you slightly shyly proffer your sample and say something like "do I give this to you?" and the doctor or nurse either says "yes, I can take that," or "no, hang on to that and give it to (person)." In obstetrics, almost without fail, the response is a gleeful "ooh, yes please! We love wee!" and do you know what's really upsetting? That's not even bothering me any more.

Saturday, May 09, 2015

16 Weeks

Time for another monthly bump pic. Well, 4-weekly. Ish. Week 12 turned out to be almost-week-13 and this is week 16-and-a-bit. It seems so strange to think that I'm almost four months along. Every day of it has taken an age and yet part of me is thinking I can't have been pregnant that long! Steve's preferred method of tracking our progress is a percentage counter to the due date, which today tells us we're at 40%, which seems very substantial. Another alternative would be to take the long view - I'll likely live another fifty years, and worry about my Offspring every single day of that, so right now, at 16 weeks pregnant, I'm not even 1% of the way through.

Nevertheless. I'm actually going to post two pictures. Here's the official one:


... which I don't really like. Taking these pictures against the bookcase and wearing the same outfit seemed like such a good way to definitely be able to see the progress. Instead, the outfit makes me feel self-conscious about my body and I think that's the first thing that comes across in the picture. I'm overweight and most of that weight is in the areas least flattered by leggings. The leggings were a sensible choice in that I should be able to wear them all through pregnancy but I don't want to be wearing that worried, how-enormous-does-my-bum-look grimace all the way through the record of my pregnancy.

I prefer this picture:


... where you can actually see that there *is* a bump now. It's not huge, granted, but this weekend is the point at which my favourite jeans no longer fit comfortably and I have two small but definite stretch marks. Bumpage is definitely there. Also, while it's still not a photo that makes me look good, I'm giving the bump a cuddle and genuinely smiling about it. So in many ways, this is a much more accurate bump picture, if we're going for experience rather than pure size.

Hopefully there will exist some other happy pictures of me while I'm pregnant. A friend very kindly passed along some really nice maternity clothes which feel comfortable to wear and make me look pregnant rather than fat. There's supposed to be a lot of growing over the next few weeks, so my hope is that we go on plenty of little jaunts out and about in the sunshine during the early summer. We have a trip to Eden coming up as well.

Meanwhile I need to decide whether to give up on continuity and do the 4-weekly bump pictures in different outfits (and possibly places), or if I declare that I've Started So By The Gods I'll Finish Dammit with the vest/leggings/bookcase combo. Input welcomed!

Friday, May 08, 2015


The other day I blogged about my private scan, and the joy of it, but also my misgivings about the way private healthcare uses fearmongering to boost profits - in this instance, by telling pregnant women that "time was running out" for them to get tests not routinely offered by the NHS.

These misgivings are reinforced when I'm on forums with parents-to-be from other countries who are dependent on less-than-stellar private healthcare packages and are having to approach all tests from a position of "can we afford it?"

So I feel wonderfully lucky to have the NHS, offering testing and screening and scanning and measuring for all sorts of things. Obviously (I hope obviously) I'm entirely against the idea of aborting a foetus for having a disability. On the other hand, I think it's a damn good idea to know if there's a treatable medical issue endangering the life of the mother or the baby. On the other other hand, screening tests are imperfect (screening determines only likely/unlikely, secondary testing is required to obtain a yes/no) and being told your pregnancy is "high risk" for something can cause a great deal of often-unnecessary worry. On the other other other hand, I can really see the logic of being able to research and prepare ahead of time for a baby which will have complex needs from birth...

It's an incredibly tangled and emotive issue, and one that it's very difficult to discuss without encountering distressing invective about disability, abortion, women's rights to make decision about their own bodies, shaming, blaming, name-calling and all sorts of other unsavouriness.

Weirdly, for me the decision has been made vastly simpler by being disabled. I know ahead of time that when I get past, say, week 38 of 40, I'm going to become difficult. At the absolute very minimum, once the baby is born and I'm on the ward, I'm going to need my wheelchair and/or walking frame beside the bed - and every disabled person reading knows that hospitals don't like you bringing your own (I think it's a philosophical problem as much as a space and hygiene issue). When I use that wheelchair or walking frame to get to the loo, I'm going to need the staff on the ward to understand that it's not appropriate to tell me that having had a baby doesn't make me disabled and to just walk properly. I may have to determine whether my PA counts as a visitor because while I'm wiped out I'll need advocacy. There's all sorts of stuff, none of it insurmountable, but all of it needing to be addressed.

So, up until the point at which I really really need to raise my head above the parapet and start being (what I fear will be construed as) fussy and awkward, I feel I should be as compliant as possible with the non-invasive testing. Build up my credit, sort of thing. For every single test, the accompanying leaflet reminds you that you have the right to refuse, but I feel that it will serve me better not to have "refused testing!!!" or worse, "has internet access" written on my notes, you know?

Wednesday, May 06, 2015

Private scan

A bit of a catch-up post, this one.

I never thought of myself as the sort of person who would opt for private healthcare. I think the NHS is a brilliant service. The pregnancy related care I have received has been wonderful, and at very difficult and distressing times of my life I have appreciated that I'm not getting a hefty bill alongside my bad news. Add to that the number of people I know whose lives have been improved or outright saved by the NHS, and... I love the NHS. It's large, imperfect, underfunded, understaffed, and awesome.

The first twelve weeks of pregnancy, dated from the first day of your last period, are when the chances of miscarriage are highest - as high as 30% for week 5 (that's the week you miss your period), then the graph curves down, 25%, 20%, 10%, until you get to week 12 when you're down to 1 or 2%. Unless there's a good medical reason to do an early scan, such as starting to bleed or being in a car crash, your first regularly-scheduled NHS scan happens when you are between 11 and 14 weeks pregnant.

By week 8 (three weeks after positive pregnancy test), Steve and I were feeling anxious, but not quite worried enough to start asking for an early scan. I didn't have any panic-worthy symptoms and it must be said that the waiting room of the Early Pregnancy Unit, populated as it is by nervous and upset women who are facing, going through, or have been through a really horrible experience, is not a place anyone would choose to be. And yet, the idea of waiting another 3-6 weeks before we would learn whether I was carrying a viable embryo, or a dead one that would need intervention to eject, was quite nerve-wracking. To make it nice and circular, I then started to worry that if my embryo was healthy then I might be harming it simply by fretting.

Week 9, we caved. The grand sum of £85, which we are currently privileged to be in a position to afford, would buy us a viability scan at a small private clinic a couple of towns away. I squared it in my head by classing it, not as "healthcare", but as an "extra". Sort of like how physiotherapy at a hospital is healthcare for medical reasons, and a massage at a beauty parlour, while having some superficial similarities, is an extra to help you relax.

I had my scan at one day shy of 10 weeks, and Steve and I still consider it the absolute best money we ever spent. Of course we might have felt differently if the outcome had been bad, but as it was... within a few seconds the sonographer had found the heartbeat, which we were able to hear as well as see, on the screen, both the little white shape of the heart itself pumping away, and a more familiar-looking chart of the spikes. The stress just melted off both of us. There followed about two minutes of just watching as various parts of the embryo, placenta, and my innards were shown to us and measured while the sonographer kept repeating wonderful, wonderful phrases like "that all looks fine" and "that's exactly where it should be" plus of course "there's definitely only one in there". Then - possibly in response to the change in my body chemistry as stress and nerves turned into euphoria and relaxation - the embryo started to move, really quite energetically. Arms and legs wiggled about, the head moved, the spine flexed, and Steve and I just sat/lay there utterly entranced.

To make it even better, the fee included not only a few printout pictures, but a DVD which was basically a screencast from the sonographer's computer for the whole scan. We must have watched it dozens of times in the first week, especially the little wiggly dance - if it was a VHS tape that segment would be getting worn out by now.

But then... then, they had to go and remind me why I love the NHS. In the folder with our details, DVD and pictures were some other leaflets. One was a price list of the other services they offer, which is fair enough, they are after all a commercial enterprise. Some of the others though, had pictures of pregnant women with clocks superimposed on their bumps, and dire warnings about how such-and-such a test is not routinely offered on the NHS and time is running out and if you're a responsible parent then really you should be paying hundreds of pounds for these extra tests! For me, this was just going too far and was everything I dislike about private healthcare. Letting me pay money to ease my own non-substantiated fears was one thing. Trying to introduce new fears to make a quick buck, with the added element of shaming those who can't just splash a spare £500... it left a really nasty taste in my mouth.

But the DVD...! I just keep coming back to it. My NHS scan at 13 weeks was every bit as wonderful in terms of seeing the foetus, and the room was comfortable, and the NHS sonographer was friendly and skilled and explained to us all sorts of interesting things, but while we happily paid the £10 for some printout pictures there was a fervent wish that we could take footage home to watch again and again. At the moment Steve and I are trying to decide whether we look into getting another private scan done at some point. We're just not sure if we'll be able to explain that no, we're not looking for testing or diagnosis or gender or anything that specific really, we just want another bit of footage of our offspring waving and the little heartbeat pulsing.

Friday, May 01, 2015

BADD 2015: Progress

Blogging Against Disablism Day, May 1st 2015

Written for Blogging Against Disablism Day 2015.

Years ago, I participated in BADD 2009 with this post about an offensive blog comment I had received. The commenter had noticed that, participating in a Bucket List style meme that was going around at the time, I'd mentioned that having a child was among the things I would like to do. She felt it her duty to inform me in no uncertain terms that it would be "cruel" of me to inflict my "seriously broken" self on a child and instructed me to "stay on birth control and accept (my) fate" of not being a parent.

It wasn't the first time I'd had to put up with that kind of garbage. In the earlier years of my illness, in an exchange I've never quite managed to get over, my sister had somewhat triumphantly told me that now I was sick I would "just have to give up" on my lifelong hope to one day have a family. When I made a slightly stunned effort to assert that disabled people could still have children and that as long as I secured the right support it would be possible, suggesting an au pair as just one potential option, my mother joined in with the marvellous line "why have kids if someone else is going to raise them?"

After having to deal with attitudes like that from my own family, I wasn't exactly going to be left devastated by a semi-anonymous blog commenter. On the contrary, having the attack coming from someone I didn't know meant that I finally had a chance to reply without worrying about the feelings of the person who'd just insulted me. But I was still a little bit concerned about what sort of response there might be, considering how BADD posts tend to get rather more exposure.

The support from the online disability community took my breath away. People were angry right along with me. Directly and indirectly, via comments and emails, parents shared their stories - not sugar-coated success stories or bitter tragedy ones, but real stories including the hard work AND the joys and achievements involved. The BADD archive, for every year since 2006, offered a category of posts on "parenting issues", both for disabled parents and for parents of a disabled child. Not to mention all the posts in other categories, written by disabled parents but not about parenting!

I felt more encouraged, rather than less. I learned about all sorts of little tricks, suggestions, ideas, and resources (although if anyone can suggest an active non-Facebook replacement for the sadly now defunct Disabled Parents Network, it'd be a help). I was able to access publications written for disabled parents telling me what sort of support I should be able to expect from Social Services, and how to go about accessing it. Sure enough, I spoke to Social Services and got written confirmation that I would be supported in my parenting role. I'm also pleased to say that having this more concrete grasp of what I'm doing appears to have enabled me to put my family's fears and prejudices to rest.

In October 2015 Steve and I are expecting that baby. We are confident. Our baby, our so very wanted baby, will arrive and will be loved and cared for, and part of that is due to the hope and practical help that BADD unlocks.