The scene has been set, a child born too early and too small, that ‘looks different’. He doesn’t tolerate feeds, and gets moved hospital- the scene is now larger, more modern and high tech, somewhere where they can view the main act with more spectators. I really don’t want to make this too much of a chronological blog about Rufus’s start in life, I’d hate for it to define him. And it would make for dull reading: day one, makes progress, day two, makes some more progress, day three, goes backwards. It’s a fairly common baby born early story, with the most common ending that they come home about when they were supposed to arrive into the world. We didn’t get that fairytale.
In that first week, bleary and tear stained with the enormity of, well, everything I don’t remember as much. I remember they were very worried about me predominantly, and reading back on a small journal I started then, there was some justice in that thinking. I was cliched in that my lowest point came 48 hours post birth, where I think I took to actually pacing. And I remember being sat in my hospital room with the consultant explaining what they were looking for in Rufus and only able to utter that I was in pain from my heart breaking. Melodramatic I know, and I’m embarrassed by my British sensibility to having been so outré, but it was honestly all I could articulate.
At first there were these minor chromosome abnormalities, which most doctors cleverly shrouded in the mystery of them being too vast, not speaking the names of what they were looking into. It took the ignorance of one doctor, busy and flustered by coping with a barrage of questioning and having to answer in not his native tongue (the same one as had greeted us in our first meeting) to throw names into the fire. Prader Willi. Cri du Chat. Now, having worked in respite care for children with disabilities one summer as a teenager, and having lived with a best friend who had worked at a pottery in a special needs school, these terms were not new to me. Plus, I’d have gone away and googled them.
Up until then, the vagueness was comforting, I didn’t really get that they were looking at potential disabilities. Suddenly, we had moved location, the scene had changed. And it was vast and bewildering. Genetics had entered stage left. My preconceptions of what it would be like to be a parent died tragically. I had, and still have some grieving to do here.
In a moment of clarity before Rufus moved hospital, wolf and I sat in a counselling room to discuss where we were at. The consultant visibly embarrassed by his colleague’s gaff, was explaining that they have to look at everything that strikes them as unusual, things that over time may or may not prove to be anything. In my own words, I heard myself say ‘so diagnosis may be beneficial, but only really time will determine a child’s path in life?’. Now if only the smug contentment that I found in figuring that out had seen me through Rufus’s entire stay in hospital, and on the odd tooth grinding worry day I have now. It may have stopped me from asking a very senior, kind and amazing consultant to stifle a snigger when I asked him if Rufus was an Albino Dwarf. That had a Puerto Rican form of kidney disease. What did I say about googling?!
In the new hospital, Rufus was seen by a team of geneticists who agreed that he actually looked a lot like me, and they would continue to run some early testing but they felt they were highly unlikely. See, time. And that was just two weeks. It looked like we’d get our fairytale. He was doing well, digestive problems aside, he was still putting on weight. If we didn’t do them physically, there were plenty of mental high fives between the wolf and I.
But then time bit us on the arse. Weeks started to blend, Rufus was continually doing his best to be a long term patient. He puked. Everything. Coffee ground aspirates. IV feeding again. His due date was creeping closer, and the weight gain had lost momentum. He’d gone odd, unresponsive or screaming all the time. Weird pockets of swelling. Another diagnosis, pyloric stenosis. Just a little operation, but he barely weighed 4 lbs. A lot of reviews of his abdominal scans, decisions not to operate. It just wasn’t adding up. Odd blood results. Today’s ward round- Rufus D, failing to thrive. We cuddled him daily, massaged his stiff joints and swollen feet, loved him endlessly. How was he failing? Was there about to be a dramatic denouement?
I remember innocently eating a sandwich in the parent’s living room, a week before his due date. There was some chatter out in the hallway, I recognised the surgeon from having him reviewed and declined to do the pyloric stenosis surgery. His words; ‘I can’t believe they’ve thought this was a digestive issue, its quite clearly his kidneys.’ I knew. I got up and blindly barged into the conversation, not caring for the usual social conventions. Are you talking about my son? No name. The surgeon did not answer. His colleague, who I had never met before, no, of course not. They walk away, quickly. They’ve been caught out. We all know it. Moment of self satisfaction, ah ha, idiots! But shit, I’m right.
Two days later came the diagnosis. The one they were sure of, they knew how it was going to play out, when Rufus’s curtains would close. Congenital nephrotic syndrome, most likely the Finnish type. Hope was evaporating, he was very, very sick. But that’s another post: Medicine, the art form not to be confused as a science. Especially by doctors.