Hugo update – the next step

Last week we had Hugo’s liver review at King’s. We’ve been building up to the appointment for a couple of weeks, with both Ross and I convinced we’d be told the news that Hugo needed a transplant. Of course, I’d have much rather if we’d been able to be positive about his prognosis, but we couldn’t ignore what was staring us plainly in the face.

And – as seems to regularly be the case – our instinct was right. Hugo’s liver is badly damaged and is failing. He needs a new one.

As the appointment progressed, we were told we would be kept in with a view to give Hugo several albumin infusions over the weekend (totally unexpectedly – and for the first time in our spate of hospital trips since November, we were totally unprepared. We hadn’t taken anything. No clean underwear, no pjs, no phone charger. Nothing. Thank goodness for my wonderful and supportive family who, as ever, pulled together and hot-footed it up after work to deliver a bag of essentials). However, his blood results were actually better than expected, and we were home again by the Saturday night.

Snoozing with Mickey in his hospital bed, during his albumin infusion.

In spite of the unexpectedly good albumin results, things have become progressively worse for our little man. In addition to the signs we were aware of (the increasing jaundice and the ascites), the blood flows into his liver, in particular, are pretty bad. He has portal hypertension, and his hepatic artery is also pretty hard. We’ve been able to see the veins on his belly for a couple of weeks now (with no alarm bells from the QEQM doctors), and we now know that this is because his blood is having to find an alternative route back to his heart.

Although we were fully expecting to be told Hugo needs a transplant, we weren’t expecting the process to be kick-started quite so quickly. Hugo has a rare blood group (B+), and it can take a long time – up to a year – for a deceased donor liver to become available for this group. The doctors told us that if Hugo had to wait that long, he would become a very, very poorly boy.

Not only that, but we believe from our research and conversations with the experts that the sooner the transplant happens, the better the chance is of the liver ‘taking’ (not being rejected by his body).

So the sooner, the better, really.

Proud daddy. Like father, like son.

Thankfully, King’s aren’t hanging around. We’ve already got the appointment through for Hugo’s assessment, following which he can be listed. Ross and I are also both waiting to be assessed to be a living donor. If one of our livers is compatible with Hugo, they will take half of it and give it to him – we’d much prefer to go down this route if we can. Our liver would grow back to normal size and function in about 6 to 8 weeks. It’s pretty amazing what the body (and modern medicine) can do, and incredibly humbling to know that we can do something to help our son in this way.

We have already had time to get our heads around the fact that this was the likely route for Hugo, and to think in depth about what it all means, the logistics and so on. It goes without saying that we are scared. To know that your baby boy needs another major operation within the first six months of his life is heartbreaking – words just can’t do the feeling justice. But we’ve realised we need to think beyond that – to focus on how much better he will be because of it, rather than let ourselves be consumed by the fear and worry that comes hand in hand with all of this. If it goes well, he won’t need the nine different doses of medication he is on now; yes, he will be on meds for life, but much reduced. So even in that respect alone, his quality of life will be improved. Then on top of that, the side-effects of the disease – the ascites, the jaundice – should all fade away. He will finally be able to roll (he’s been trying to for a couple of weeks now, but his belly just gets in the way). We can start to lead a ‘normal’ life, and really look to the future without this big question mark hanging over us.

Keep rollin’…

It seems alien to say that we were hoping for this to happen; of course, in an ideal world you would never wish for your child to need a transplant. However, when you are watching your baby slowly getting poorlier as the days go on, and you know that a transplant is the only option to make an impact on his health, then you do wish for it. And we’re now ready to face it head on and at full speed. One of the frustrating things about the Biliary Atresia, and the Kasai, is that it is very difficult to ever really know what the future holds – at least we can hope that, once he gets his new liver, the road will be smoother for Hugo.