“The Trick is to Keep Breathing”

This week was Scottish Book Week. Inevitably, there was a Greatest Hits List of Scottish books compiled to coincide with this event. Funnily enough, I’ve been thinking a lot, recently, about one of the books that made the Top 10 – Janice Galloway’s The Trick is to Keep Breathing. In truth, I’ve been thinking less about the book than its title, which has a particular resonance for us.

R has issues with breathing. Countless times a day, she simply stops doing it. Her tummy distends and she gasps desperately. When I describe it, health professionals frequently (mis-)understand this to be some kind of voluntary breath-holding but its not that at all. There is nothing voluntary about it. I imagine that it feels a bit like having your head held under water, over and over again. One of the things that troubles me is how normal this has become for us, although also by and large, its become normal for R too.

So this is normal. R also periodically experiences far more frightening episodes. On these occasions, she loses consciousness, stops breathing. She is pale, lifeless and blue-lipped. The most recent of these occurred in the ambulance on the way into hospital. I watched, terrified, as the paramedic tried to revive my little girl while the ambulance, racing to the hospital, tossed him around the vehicle. These episodes appear to have a different origin, possibly a consequence of her reflux. Reflux sounds so trivial but it turns out, if you are R, it’s not. (One might reasonably think that not breathing would be the sort of symptom that would guarantee a prioritisation of your case. We have, however, been asking for a gastroenterology appointment for a year. She will see the consultant in January. I can’t help but think that if F or EB were suffering in the way that R does that they would have been seen months ago. This is not exceptional either. Its absolutely typical. Even on that day when she was rushed to hospital in the ambulance, R waited hours to see a doctor, far longer than the other children in the assessment unit. By the time a doctor eventually came to see her she was so deeply unconscious that they struggled to rouse her. Having arrived at 8pm, R didn’t get taken up to the ward until 4am. Yes, you are quite right, I am really very angry about all this). And then, of course, there is the hyperventilating…

Until recently, we could, at least, take a little comfort from the knowledge that while R’s days are punctuated by apnoea, she breathed normally overnight. This is no longer true. This is alarming enough for us but it’s frightening R too. Every night, recently, she has woken up breath holding. She is desperately tired but apparently too scared to settle back down to sleep. It can go on for hours. We are all exhausted.

Right now, there is nothing that can be done about R’s breath holding. There is encouraging research, but it is likely to be years before any drug comes to market – even assuming that it turns out to work as well in humans as it apparently does in mice models of the disorders. So meantime, all that we can do is to helplessly intone “keep breathing”.

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