Caring for boys with severe haemophilia A: a family journey (part 2)

In our second blog about Lauren, Ben and their family, they focus on the role that teamwork and trust have played in their journey with haemophilia A.

A family team

Teamwork has played – and continues to play – a big part in Lauren and Ben’s family journey with haemophilia A. From the early days of Lauren’s first pregnancy, the haemophilia treatment centre and their local hospital have worked together to provide joint care. But at home, caring for their sons Jacob and Liam (pseudonyms) is also very much about being a family team.

The couple’s approach to helping Jacob, their eldest son, to overcome his fears around treatment was both about supporting each other and making sure Jacob really understood why having it was so important. With both Jacob and Liam, involving them in conversations and decisions related to their haemophilia and its treatment has been central to their approach. 

Lauren and Ben have always been determined that the boys shouldn’t think they can’t do something because of their haemophilia – but they also ensure that they understand that there can be consequences if, for example, they don’t have their treatment. Lauren notices that when they have days out with friends both boys get pains in their legs and feet, but she uses this as a learning point. 

“We say to them, ‘If you didn’t have our treatment it would be a lot worse, you would be in more pain.’ And I think they understand that quite well,” she says.

Treatment experience

The ‘family team’ approach to treatment has been a source of strength, and ultimately pride, for Lauren and Ben. Having gone through some very difficult times with Jacob, they were more confident in how to approach treating Liam. Informed by their early experiences with Jacob, they opted for Liam to have a port inserted for treatment when he was six months old, despite him having had very few bleeds.

“It was more that we knew he was going to start walking and crawling, and to give us that confidence that we didn’t have to be behind him all the time,” says Lauren. “We wanted to try and relax a little bit more around him.”

It was also previous experience and signs of similar problems potentially to come that led Lauren and Ben to begin treating Liam intravenously. Liam was around two and a half years old when they introduced him to the idea of being given his treatment via injection into a vein. By that time, Jacob had settled into being treated intravenously, and Liam was able to watch and learn from his brother.

“He’d be sitting next to him, and we’d be like, ‘Look, this is what we’re doing,’” says Lauren. “We would be putting the tourniquet on him – just the tourniquet to being with. And the boys had their teddies and would pretend to give them needles as well.”

Ben explains that, despite being a little nervous, Liam tolerated being treated intravenously from the start. He’s now very confident about it and has even demonstrated how he receives his treatment to an older boy during a clinic visit.

“Liam just sat there, gave the nurse his arm, got his iPad, watched his iPad, she did the needle, and the boy was like, ‘Oh wow!’” says Ben. “He was quite impressed and stroked Liam’s back and said, ‘Well done, well done, mate.’ I was really proud. It’s weird what you take pride in, but I was really, really proud at that moment.”

Parental partnership

Their experience of already having one child with severe haemophilia perhaps made things easier for Lauren and Ben when it came to approaching Liam’s treatment and care. They’re also certain, however, that working well together as a team continues to play an enormous part in overcoming anxieties and being able to meet everything that family life with haemophilia throws at them.

Ben says that while Lauren is more cautious and very aware of risks, his approach is now more laid back – something that has come with the confidence of knowing he is able to treat both boys effectively, as and when needed.

“I know I’m tooled up. I really pushed myself to make sure I can do their injections as well as I can,” he says. “If something goes sideways, I know I can deliver the treatment – but Lauren is there to make sure things don’t go sideways, as potentially they can.”

Brother to brother

Lauren and Ben recognise a supportive side in the relationship that Jacob and Liam have. When pregnant with Liam, Lauren says she worried about how Jacob would feel if his younger brother didn’t have haemophilia and could do things that he couldn’t.

“We’d wish that neither of them had haemophilia, but I feel like they can support each other,” she says. “They both know what the other is going through. They’re always going to have each other to help each other out.”

In fact, Lauren and Ben’s open approach and involvement of the boys in their treatment is already reflected in how they support each other, as Ben explains: “Jacob will often say to Liam, ‘It’s okay, daddy’s just going take some blood out and then he’s going to push it back.’ Like, if he does get a little bit anxious, he’ll talk him through it. And it’s the same with Jacob – Liam is his biggest champion.”

“They’re both very aware and very clever, so they listen to what we say and I think they’re just kind of reiterating what we do,” says Lauren. “That’s nice because they obviously find it reassuring.”

School support

Teamwork also came into play when the boys started school. Seeing children go to school for the first time can be difficult for any parent, whether or not they have a bleeding disorder. Learning to trust that school staff could keep Jacob and Liam safe was a steep learning curve that Lauren found difficult.

“With Jacob, when he started nursery, it was really quite hard because we’d protected him so much – and the same with Liam as well,” she says. “Letting go of that protection and trusting other people to do it for you, looking out for the same sorts of things that you would… I found it hard.”

Ben took a more stoic view, knowing that the situation placed a great deal of expectation on school staff too.

“In life, I plan for things that will probably never happen – that’s just my mentality. But with the boys, I had to force myself to think a different way, and that is that I’ve got to let them be children, I’ve got to let this play out. And yes, if a teacher or an assistant or somebody doesn’t spot something, we’ll spot it, we’ll find it – that’s the learning curve.”

At the start of every school year, school staff receive training from staff at Jacob and Liam’s treatment centre, and Lauren and Ben speak with them regularly about things to look out for. They found that the school staff were keen to learn and, having got to know both boys, now feel much more confident – which has given Lauren and Ben confidence and reassurance too.

“They ask us to go in at the beginning of the year, just to give our perspective on what we look for, what it might look like if the boys are hurting, and anything else, really,” says Ben. “We always do that and they just call us if they’re worried about anything.”

Making connections

Keen to let their boys live as normal a life as possible, Lauren and Ben have found a lot of support and reassurance through connecting with other families who have children affected by haemophilia. They regularly attend events organised by a patient group and say that it’s just good to talk.

“Talking to people who’ve gone through very similar things… we’re all just fumbling our way through this as quickly and efficiently as we can,” says Ben. “You’ve got to air it out. You have to. People are not alone.”

They also recognise how this benefits Jacob and Liam.

“It’s nice for the boys when we go on those days,” says Lauren. “We say, ‘Oh, we’re going to see other children who have sharpies like you do,’ because they’re the only two in their whole school… round here there’s no one really who has haemophilia. So, they quite like those days. They get to play and talk with the other kids.

With our thanks to Lauren and Ben for sharing their story with us

You can read part 1 of their family journey with haemophilia A here

Further information

A number of patient organisations and charities provide support and advocacy for people with bleeding disorders and their families. In the UK these include:

• The Haemophilia Society
• Haemophilia Scotland
• Haemophilia Wales
• Haemophilia Northern Ireland
• Local families with bleeding disorders

About the author

Kathryn Jenner is Communications and Community Manager at Haemnet Ltd.