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Henry’s story

EHL trial treatment – a ‘no-brainer’ for young Henry

I’m Sara Jane and my son Henry is 23 months old now – he has severe haemophilia B with 0% factor. I’ve known since I was pregnant that I was having a boy with haemophilia B. It didn’t particularly worry me as I grew up with it – my sister and I are both carriers, as is my mum, and my brother has haemophilia.

When I was pregnant, the specialist told us about a trial for an extended half-life (EHL) factor replacement. We were offered a place before it started in the UK so we had to wait but were told that more than three spontaneous bleeds would mean Henry couldn’t take part. At eight months he had his first spontaneous bleed – in his neck. A month later he had one in his knee shortly followed by a subsequent bleed in the same joint. To try and prevent other bleeds, Henry was fitted with a plaster cast from his ankle to his hip. Not easy to manage with a young baby! Fortunately for Henry, a few weeks later the trial was approved and he had a port fitted a week after his first birthday.

Unfortunately, after two different attempts, Henry ended up without a port as he had numerous problems with them and they both became infected. This meant that we quickly had to learn to give him IV injections. That’s difficult enough with a chunky baby with tiny veins, but you also can’t explain what you are doing or why. If Henry wasn’t on the trial he would have to have prophylaxis every three days. Now he only has one injection a week, so the new drug has made a huge difference, more than halving the injections he needs.

Henry has been on the EHL factor for nearly a year now and it’s been brilliant. He hasn’t had a single bleed to date, touch wood! His factor level hasn’t fallen below 10% so that means we can treat him as a ‘normal’ toddler. He had a fall last week – two black eyes and a swollen nose – but even then he didn’t need any extra factor.

We haven’t had any problems with side effects. We were told there could potentially be a problem with inhibitors, but fortunately there hasn’t. I haven’t found much difference in giving the injections. You have to mix it straight from the fridge, but then you have a couple of hours to use it. We can let it warm to room temperature so the injection itself isn’t so uncomfortable for Henry. One small thing – but it’s a help – is that there aren’t as many boxes and bottles to store, given that he has half as many injections as he used to.

Being on the trial has had a huge impact on us. The main thing I’d say is that it’s given me peace of mind. Henry can be a normal child and it’s taken away that fear I had all the time that he’d have a major bleed. He’s full time at nursery and the staff were terrified of him having an accident. Now, they’re much more comfortable with having him there – they ring me if he’s bumped himself, but of course they do that with all the other children too. He doesn’t get treated any differently.

I feel we’ve got a brighter future because of the EHL factor. We’re going on holiday soon and I’d be really worried about bleeds while we’re away if he was on the old treatment. As he grows up, he’ll be able to join in much more than he would have. While we wouldn’t want him to do really rough contact sports like rugby, there’s now no reason why he shouldn’t kick a ball around with his dad and his mates.

If anyone asked me about having this type of treatment, I’d say don’t hesitate. Since starting it, my son has been able to live like any other ‘normal’ little boy his age. It’s given me more peace of mind and there is far less pressure on friends and family when they’re looking after him. Most importantly, it means fewer injections for Henry and so far, no bleeds. If you aren’t offered it, I’d say go and ask. It’s a no-brainer.