The Valley of the Shadow of Death

As many of you know, we've had a tricky couple of weeks. Actually, tricky's probably putting it a bit lightly...

It all started on Friday 15th. Having been mercifully spared appointments at the hospital for 7 weeks, we were booked in for an ultrasound to check everything was going ok. It had all been so positive last time we had no reason to believe anything would be any different. Our appointment was at 10am. The Fetal Medicine Unit like to faff around weighing me and doing my blood pressure for a bit beforehand, so we were expecting to be waiting for a bit.

Not 4 hours though.

Finally, at 2pm, with me almost bored to tears and Paul complaining that he may well be dying of starvation, we were called in for the scan. Now, I think we'd probably caught our dear Consultant on a bad day (he'd just spent a very long time with a couple who had a film crew...) First of all, his research assistant tried to scan me, but gave up after complaining that the scanner was no good and the baby was the wrong way up. Then the Consultant took over.

"I can't see the cerebellum" said he, and explained this could mean that Baby A has Arnold-Chiari type 3 malformation (we already knew he had Arnold-Chiari type 2, normal for spina bifida). He also said that the head was extremely small and might be termed clinical Microcephaly. I would need an MRI scan. And having the MRI and getting results would take 2 weeks.

So off we were despatched, having been in the waiting room for 4 hours and the scanning room for barely 15 minutes, armed with some medical terms which "would affect the prognosis and resuscitation upon birth" but we weren't sure how.

Now, Google is a wonderful tool if you want to, say, find a restaurant or look up train times. However, Googling either Arnold-Chiari type 3 or clinical Microcephaly does not provide happy reading. 14 weeks ago, when we found out Baby A had spina bifida mylomeningocele, we Googled to find many, many people with the condition living very fulfilled lives; wheelchairs, leg braces and catheters not affecting their ability to work, study, enjoy hobbies, form friendships, live independently, marry, have children etc. etc. These conditions seemed much more grave, AC type 3 in particular, where the bottom of the brain severely herniates, often out of the back of the head or neck. Wikipedia proclaimed that children with AC type 3 do not normally live past the age of 2 or 3 years old.

Ah. Right then.

2 weeks of worry started there, not helped by a cold, restless leg syndrome and another kidney infection. Sleeping was impossible. The MRI came and went and it felt good to have got one more step along the way to finding out what was happening. Being surrounded by baby stuff was not easy, nor were the well-intentioned strangers in shops asking "when's it due?", nor really was Baby A's kicking, because I had no idea whether he had the capacity to kick (or breath, even) outside the womb.

I think you go through phases. At the start, I was very upset, and Paul was angry (though he couldn't work out who he was angry with, given it wasn't anyone's fault...) Then we went into practical mode, even thinking - "well, if we were to lose him, what would we need to do?" Then we'd go optimistic for a bit - "it's all a mistake, they simply couldn't see the brain properly on the scanner." Then realistic - "why would he even say it if it wasn't a possibility?" Then philosophical - "maybe it's just not meant to be..." The theological questions which I'd written about 'academically' became a stark reality - Why would God cause something like this? What are the ethics around keeping a child alive, but in pain, for just a couple of years?

Finally, we were back at the hospital yesterday. We were only waiting 30 minutes this time, thank goodness. A Doctor did the scanning, under the watchful eye of our Consultant. Baby A had the decency to be head-down this time, so they could see the brain easily. "Aha," said the Consultant, after a short while, "I couldn't see the cerebellum last time, but there it is!" - Relief!

The outcome is, well, we're sort of back to the same prognosis we were working on before. The Arnold-Chiari type 2 (where some of the cerebellum herniates into the neck) is a little more severe than they'd like, but not severe enough that he wouldn't be able to breath on birth. They'll have a team on standby just in case, but it's very unlikely it will cause a problem. His head is a little smaller than usual, but not small enough to be termed Microcephaly or to cause any problems, and it now appears to be catching up with his body. Unusually, he does not yet have hydrocephalus (fluid on the brain, very common in spina bifida) and his spinal defect has been confirmed as 'sacral only' (right at the bottom of the spine, meaning he has a good chance of one day being able to walk).

I've just realised this post is rather medical! Sorry about that. But now we've had some better news it feels good to explain everything. I think it's been an important experience for us. For a start, it's made us realise how lucky we are to have this baby. I'm well aware that there are very many people who are not so lucky. I've also realised how lucky we are to have the support network we do. Our families are always supremely supportive. Then there's college; it's only now that I realise how many kind people have just popped round to check we're ok, staff and students. And friends from home of course, who have rung and texted and emailed. And all those little Facebook messages too.

With 5-and-a-half weeks to go til the grand arrival of Baby A, we're back in the Westcountry, seeing friends and family and looking at another Curacy. Life is on the move again...!

This Time Next Year...

Sorry to keep you. I've had a nice few weeks. Outstanding memories include:
- The Jubilee, which I mostly watched on TV while sprawled on my parents' sofa with Lilibet the cat.
- A lovely afternoon at Killerton House with Emily, Tabitha, Emma and Chris. I ate a lot of scones and encountered a bear.
- A nice evening with friends earlier in the week, marred only by the great Trivial Pursuit catastrophe in which the boys came back from 5-0 pieces of pie to win.
- Bright Hour last night, after which my ribs ache. Kate and I did a sketch about pregnancy which seemed to go down well. Other highlights included a spectacular rendition of 'Bless me Jesus one more time' by a very talented ordinand, and the Principal interviewing himself.

T'was the Leavers service this morning. In a crowded church we wished them well as they trotted off in cassocks and armed with their stoles (scarfy things vicars wear round their necks, not to be confused with stools which are something quite different). Most of them will be ordained Deacons on 30th June or 1st July. A few (like the Exeter ones) will have to wait until 16th September. Many of them are on the road already this afternoon, having emptied their college homes of possessions. Some are around for a few days to get those final boxes packed.

It's going to be really odd not seeing those familiar faces around any more. It's amazing how much you take for granted, even those little cheery conversations with the fellow students that you don't know so well. We've only a week to go until the end of term, but I think the college is going to feel like quite an empty place.

So, this time next year, that will be me. This time last year I was looking forward to starting college while stressing about a house sale, buying my first cassock and knocking a wing mirror off a hire van during an ill-fated trip to the dump while de-clogging Alderson Manors. At that time, coming out of the other end of college felt like a world away. But here I am at the half-way point, and suddenly the end is in sight - albeit a sort of blurry and vague end, with a lot of exciting stuff between me and it.

Talks with the Diocese about just where I'm going to go have kicked off, which is great. Unfortunately, the Curacy-finding stage is not particularly Bloggable, and I'm probably going to have to keep radio silence until I've found somewhere and all the paperwork has been signed off. Needless to say, while it feels like things are happening, I'm nowhere near finding somewhere as yet. I'm feeling pretty chilled out though - I'm extremely fortunate in that Exeter is a big Diocese with lots of Curacies, so it's unlikely I'll end up with nowhere to go.

Of course, the less blurry and vague deadline is Baby A. We now have precisely 2 months to go until 'A Day' which currently sits at 8th August. I'm amazed at how strong the kicking is getting. I never really thought that I'd sit in church watching my stomach moving independently. Very strange, but somehow cool also.

So, the long Summer stands ahead of us with a couple of essays to do, a couple of weeks in Somerset to look forward to, oh and a small child to look forward to also. I'm determined not to wish time away but to enjoy each day. Cliched, but good advice always, I think.