A Mothers Story

What a Lucky Thing We Dared Have a Child 

My father was a haemophiliac and I’m a carrier myself, so I was fully aware of the risks of having a child with haemophilia. I was prepared, yet didn’t know what I was letting myself in for all the same.

Sometimes I can feel guilt towards Benjamin, when I see he’s finding it hard with all those injections. We know what a difficult life it was, being a haemophiliac, yet we chose to have children. We’ve given Benjamin a life with a lot of disquiet and sometimes pain. I sometimes wonder whether he will hold it against me at some point. At other times, when everything is going swimmingly, I think the exact opposite. What a good thing it was that we didn’t refrain from having children for fear of haemophilia – Benjamin lives a  perfectly normal, splendid life after all apart from the injections. I grew up with a father who had haemophilia, and I didn’t’ notice that much about his illness. He never complained, even though no treatment other than blood transfusion was available at the time. We used to travel all over the place and do everything other families did.

My father died when I was sixteen, and I was the only child in our family. My parents didn’t dare have another child. My husband and I reasoned the other way around. We decided early on to have lots of  children – regardless of whether or not they were haemophiliacs. My husband grew up with four siblings, and I’ve always wished for siblings.

We now have three children: a girl and two boys, the middle boy has haemophilia. Many people take if for granted that they’ll have a healthy child. So they’re shocked when everything doesn’t work out normally. We weren’t. We were prepared.

My mother has never been particularly concerned that Benjamin is a haemophiliac. After all, she herself lived with a man with haemophilia. What’s more, she has kept abreast of developments and knows there are so many medical advances. We were just a little unlucky, she things, and shrugs her shoulders. My old grandmother, on the other hand, was alarmed when Benjamin’s haemophilia was diagnosed. You see, she remembered my father growing up at a time when there was no treatment whatsoever.

Grandmother died a couple of years ago, but I might have wished that she’d been alive today and had an opportunity to watch Benjamin growing up. Imagine if she’d been allowed to see how much easier we find things than when she was the mother of a haemophiliac child. With preventive treatment, life has become simpler for families with haemophilia, though in my heart of hearts I hope everything will get simpler in future. Imagine if new medicines and treatments emerge that enable Benjamin to do without the injections too? Many people think it’s a shame for Benjamin because he has to have injections, yet they’re something he’s used to, something he’s always done. It’s an everyday routine that is part of life, and it’s nothing strange to him. It would be worse if the haemophilia presented when the children were ten or fifteen. Then it would feel much more dramatic. Benjamin has no inkling that things could be different, even though he recently said: “I don’t want to be a haemophiliac anymore”. Then he’d suddenly discovered that not all other children were haemophiliacs. Benjamin is given injections twice a week and hasn’t had any bleeding since he started on preventive treatment.
His big sister Rebecca thinks it’s a great pity that her little brother has to have injections. At the same time, she’s a little envious that he always comes home with toys from the hospital when he’s had a jab. She wants presents too.

I can inject you if you want; then you can have a present too, I tell her. Then she no longer wants anything, of course.

We were in Crete for a week when Benjamin was nine months old. That was before we took any preventive treatment, in other words. Since then our lives have been ruled by the drive to our health centre and having injections twice a week. As long as we’re not administering injections ourselves, we don’t go far away on holidays. My eight year old daughter Rebecca gets upset about it easily. This year we’ve opted to split up to go on holidays. My daughter and I are going to the Mediterranean on a week’s sunshine holiday, while my husband is taking the boys with him toBergen.

Just now Benjamin’s haemophilia restricts the entire family, but it does so for such a short time. We’ll soon be learning to administer injections ourselves, and everything will be much easier then. Above all it will be nice to regain control of ourselves. Benjamin only permits certain people to inject him. He doesn’t want us parents giving him injections. There are some nurses at the doctor’s who he feel completely safe with.

In Norway, the children aren’t allowed to start on preventive injections until they’ve had their first bleed. It was weird waiting for the first bleed to occur. We knew it would come along sooner or later, but we didn’t know what a bleed would look like, how much pain he’d be in, or what consequences it would have. How can you tell that a baby is having a bleed?

When Benjamin was four months old, my husband tripped no the stairs with Benjamin in his arms. There was a calamitous atmosphere at home. Everyone was crying, but it turned out that Benjamin hadn’t had any dangerous bleeding at all. He’d just banged himself, as any other children can do. The tricky thing about haemophilia is its very unpredictability.

I can remember a time when we were due to go to the first party since Benjamin’s birth. He was a year old and grandma and grandpa were due to babysit. My husband rubbed Benjamin’s cheeks with a cream before we left, but then Benjamin started crying. “What does that cream contain?” grandpa asked. But straight away we realized it wasn’t the cream that hurt, but something was wrong, and we went to the hospital. I sat there in A&E in my high-heeled shoes and my sparkly party frock.

Benjamin had had his first bleed. It was a so-called spontaneous bleed, which can start on its own without any external influences. We were almost relieved when Benjamin finally had his bleed. We thought it would be much worse that it was.

My son goes to a normal nursery and joins in with the playing exactly like all the other children. The only ban we have is that Benjamin is not allowed to jump on the trampoline on his own. Benjamin is a fairly calm and cautious boy. That’s his nature, not something we’ve brought him up to be. It makes life easier that he’s a calm child.

His younger brother is much more unruly and dare-devil as a personality. As we gradually choose sports for Benjamin, we’ll try to steer him in the direction of swimming. He’s already started going swimming. I’ve also considered karate. Since a fight is dangerous for him when he grows up, it’s good that he can defend himself if he’s attacked.

In some of the pictures from the nursery that are taken every year. Benjamin has a hat on. That’s because he had a bump somewhere.

It hurts, knowing that my child will have to suffer an illness all his life. In the midst of all the joy we have together, I’m stricken almost daily by a slightly sad feeling. My husband takes things slightly more in his stride. Before we had children, I was worried what my husband would think. Would he want to have children with me, even though I was a carrier of haemophilia?

Obviously, we’re going to have children, he reasoned. Even if it’s 100 boys with haemophilia. It felt really nice that he wasn’t perturbed.

Marianne, mother of Benjamin, 4, who has haemophilia aged 38 fromNorway

Taken from the book An Extraordinary Ordinary Life – 9 stories about haemophilia