Scid-ding off the tracks

Here's a thing. You set out to make a baby and it all goes swimmingly. The baby is born and is healthy and grows up to be everything you envisaged - with perhaps more love of gore and zombies than you anticipated - but your beloved Son no 1. And then you are so impressed and proud of yourselves with this little piece of perfection you think you might try again. But it's not as easy the second time around: one miscarriage is devastating; two is fucking awful. So you start to get your head around just having the one perfect child and maybe trying again one day when everything settles down and then BAM! Some persistent little bugger gets through and before you know it, your Christmas is screwed with pregnancy hormones you know nothing about and suddenly you're trying to tamp down 9 months of increasing anxiety because, you know, we were just REALLY LUCKY the first time.

But the baby is born and is fine and is another piece of perfection. Hooray! We have done it again! We have increased our mark on this earth by two and we can stop there and know we are complete. Of course around week 4, wind hits and the baby cries constantly until you figure out new milks and bottles. Then he gets a bad cold which makes it hard for him to breathe and oral thrush which makes it impossible for him to eat. The paediatrician shakes his head and says that everything will calm down eventually. The doctors prescribe for the oral thrush which goes away but the baby is left with a cough. A cough which persists 24 hours a day, 7 days a week. A cough that means he can only sleep lying on my chest. A cough that means every precious video we take is accompanied by a background noise of him hacking away. A cough that doctors dismiss week after week as a floppy larynx, a 100-day cough, a bit of a nuisance. You mark the weeks - this time next week it has to be better, this time next week we will be sleeping - but the weeks slip by unremarkable except for the fact that nothing changes. You feel like you're slowly going insane through sleep deprivation and the fact that deep deep down in your bone marrow there is something deeply wrong here.

Then one day you finally get to see another paediatrician, one who listens and takes you seriously when you say you haven't slept for 74 nights and he organises scans and mri and ultrasounds and for a week you bring your tiny baby into the hospital every day for a new machine to look at the inside of him. In the middle of this, suddenly he stops eating, starts being sick and on the one day you're not due in hospital, you're there at 6 in the morning because you HAVE HAD ENOUGH AND YOU ARE NOT BRINGING THIS CHILD HOME UNTIL SOMEONE HAS MADE HIM BETTER. And they give him antibiotics and within 24 hours the coughing has stopped. And you sleep. And you start to think it's going to be ok.

But them they do blood tests and the MRI and bit by bit a picture emerges: A small thymus gland. A small spleen. A floppy trachea. None of these really make any impact but terms like Di George syndrome are bandied around. and then dismissed. And then they look at his blood and your world falls apart. The beloved shit-hot paediatrician become an increasingly articulate angel of doom who gives you worse news every time he phones: A small thymus gland indicates a lack of T cells. T cells fight infection. There are no immuno-globulins. They fight infection too. It seems Sam is lacking his army that fights off illness - he mentions SCID (Severe combined immune deficiency) but he's puzzled because Sam looks so well and shook off the cough so quickly - and we have to move NOW NOW NOW to Newcastle where we know no-one but we have to be for a week or two whilst they run more tests and keep him under surveillance. They want us there tomorrow but we have Son no 1 to consider and we can't go until the Monday.

Four days later we set off on the 3 ½ hour journey to Newcastle. It's a journey I want to get over and done with and never want to end. We arrive and we're swept into a world we never wanted to be a part of. And here's the kicker. From musing on the remote possibility that he might need a bone marrow transplant like a typical SCID kid, possibly, maybe, remotely, suddenly it's the reason we're here. It's a God-given certainty and we plunge straight in. It's like someone turned the telescope the other way round and the remote horizon is suddenly up close and in your face and threatening to smother you. So you take a deep breath and start talking donors and blood and T cells and immuno-globulins and B-cells and lymphocites and you're following it but not following because fucking hell, this is your baby and what the hell was he DOING on the day he was supposed to be taking care of this shit? And why are we talking about chemo and bone marrow and Christ allfucking mighty they start talking about his brother being a donor and right now we're not breathing, we're suffocating under a weight of information we have no idea how to process. And we're not going home. We're here for the foreseeable. It's right here in our faces and we can't retreat, we can only go forward. We never even really got to say goodbye to the life we worked so bloody hard to build. But it's gone, for the time being. Right now, right here is all we have.