I will never forget the first time I heard the word ‘haemophilia’. It was over the phone. I had called the hospital for the blood test results we had been waiting for, after spending two long days in hospital.
“Most children lead a fairly normal life with this condition,” the doctor said. “What was going on? How was this even happening to us?” I thought. We were told a specialist would call the following day and that it was best to stay off the internet until I had spoken to them.
I hung up the phone, cried on my kitchen floor and Googled the life out of haemophilia. The term bleeding disorder was something I had heard of, but not something I had any understanding of. It all just sounded terrifying – internal bleeding, bleeds on the brain, surgery, medication every other day, the list goes on. But the phrase that hung over me the most was, and still is, ’incurable’.
How our haemophilia journey began
Louie and his mother, Rosie. Image: Rosie Lewis
Louie was just eight months old when he was diagnosed. I had taken him to the GP after noticing bruises. They started appearing when he was around five or six months, and gradually got worse. His torso would bruise from things like swings or shopping trolleys. Long car journeys and prolonged time in the car seat would cause the backs of his legs to be covered in bruises. Banging his wrists on toys or moving around in the bath seat would have the same effect, complete with lumps underneath that I now know were haematomas.
After my sleepless nights spent on the internet, I discovered that Haemophilia varies a lot. People with the condition mildly can lead totally normal lives, only really affected by serious trauma or surgery, whereas others can have spontaneous internal bleeding – without warning or cause.
The next day I spoke to the specialist who confirmed that Louie had the most severe form of haemophilia – haemophilia A. His body was seriously lacking in the clotting protein Factor 8 his level being less than one per cent. A normal range is between 50 per cent and 150 per cent, showing us just how serious Louie’s condition is.
The doctors confirmed Louie would need surgery to have a port fitted so we could administer his medication every other day through a device that attaches to a vein directly to his heart. I felt like I was drowning. He was the happiest baby, he loved everyone and everything. He smiled at the drop of a hat and could wrap anyone around his little finger – “how can he have something so seriously wrong with him?” I thought.
Visiting the Haemophilia Treatment Centre
When we first visited the Haemophilia Treatment Centre, which is a ferry ride away, the first thing I asked the nurse was “Is he going to bleed to death?” I just blurted it out, I had to know the answer – it was all I could think about. She explained to me that haemophilia doesn’t make you bleed any quicker than a normal person, it just takes longer to stop bleeding. She told us Louie would need a bandage where another child would need a plaster, explained the signs we needed to look out for regarding internal bleeds, and gave us some reading to take home. We were at the hospital for quite a few hours that day, we asked tonnes of questions and the team were quite honestly, brilliant. We left feeling a lot calmer and had a much better understanding of what was to come, although we were still terrified.
The medics told us that they wouldn’t operate on Louie straight away as they didn’t want to put him on medication until it was completely necessary. This is because it is possible for children to develop what are known as inhibitors, where their bodies reject the medication, having serious consequences. Worryingly, we were told we’d have to wait for his first internal bleed before he was to start.
So it was a waiting game. For three months we protected our boy in every way we possibly could. Specialist cot bumpers, foam mats everywhere, dog beds velcroed to the wall – you name it, I’ve baby-proofed it! We visited the hospital regularly for check-ups and updates and each time the doctors were amazed Louie hadn’t had a bleed yet.
Hope – a new haemophilia drug
Hemlibra – a revolutionary drug for haemophilia. Image: Rosie Lewis
In October 2019 we heard the news that a new drug has been licensed for patients with haemophilia A called Hemlibra – it was revolutionary and meant that if Louie could go onto it he would not need surgery as it was administered via an under the skin injection rather than via a vein. What’s more, it was every two weeks rather than every other day. This was HUGE for me. Of course, as Louie’s mum, my first concern was his health and his safety, but I was also massively concerned about the psychological impact of being injected every other day with a treatment schedule that could take up to 45 minutes each time. As soon as we saw the doctors we asked for Louie to go onto Hemlibra. They were hesitant as it was such a new drug and they had no other patients on it, let alone a baby. Eventually, they agreed, and Louie started his treatment in January 2020.
We were trained on how to administer the injection and now do this at home every other Monday. I’m not going to say it is easy, it isn’t. Louie hates it, but it’s over in a minute, and he is snuggled up watching Peppa Pig with a couple of chocolate buttons in no time. The bruises disappeared almost instantly. This was more emotional for me than I had ever considered, but seeing him bruise-free was just incredible.
We still have to be careful with Louie, and at nearly two he is probably at the trickiest age for this condition – he is into everything and just like all two-year-olds he knows what he wants (and normally gets it!). He also started running around with his eyes closed which doesn’t do much for my sanity, but we have come such a long way as a family.
‘Through the dark times, you realise your strength’
Rosie Lewis with her family. Image: Rosie Lewis
I had some dark days early on, my anxiety was through the roof and I just wanted to wrap Louie up and keep him safe from the world. Some days I still want this, but I know it won’t do him any good. I am determined that his haemophilia won’t hold him back. It is part of his DNA, it is something he has, not something he is.
I still worry, I always will. But now we know Louie has some protection from his medication our worries have lessened. Our team is just a phone call away and have guided me many times after Louie has taken a tumble or a bump to the head. I know what to do in an emergency, but touch wood, we haven’t had one yet.
It is through dark times you realise your strength – Louie is lucky to have such a brilliant big brother, who will protect him as he grows. Archie is six now and he says Louie is a ‘haemophilia hero’, he helps me setting up his medication and looks out for his little brother like a total star. Equally, my husband is just the best daddy around, he keeps us all calm. Louie will never face anything alone because we are all right behind him, fighting his corner and cheering him on.