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...!
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