Each person with haemophilia has his own experience with the disorder. What happens with your child may be different from another child’s experience. Likewise, if you hear about something that has happened to another child, your child may not have the same problem.
Over time you will become skilled at recognising your child’s patterns and when there are problems. However, there are a few generalisations that can be made.
It will take a little while to come to terms with your child’s diagnosis. While things may seem unsettled now, you will learn to deal with it. Many parents who thought they couldn’t cope have been surprised months later when they realise they are coping very well.
Babies usually have very few problems, with the exception of circumcision. As your child becomes mobile, there will be more bruises and bleeds. They are often caused by tumbling as he learns to crawl and walk. This is normal and your Haemophilia Centre will advise you on the appropriate treatment. Older children also get bleeds from rough play and sometimes for no reason at all (spontaneous bleeds). Again, your Haemophilia Centre will advise on appropriate treatments.
There are very few things your child will not be able to do. He will be able to go to regular schools, join in most activities, get a job and have a family.
He may have a lot of bruises, which may take weeks to fade. They are a bit lumpier than usual and don’t look very nice, but they are not harmful.
When your child has a bleed, he will need to have it treated promptly. Frequency of treatment depends upon how severe your child’s haemophilia is and his individual tendency to have bleeds. Treatment is initially given in hospital. If your child requires regular treatment (prophylaxis) and you are comfortable to do so, you can learn to treat at home. Children are generally treated by their Haemophilia Centre initially. Don’t worry about treating at home yet. If home treatment is appropriate for your child, the Centre staff will discuss this with you at some point in the future.
Your child will be able to have babysitters, attend day care and so on. You will just need to ensure that whoever is in charge is aware that your child has haemophilia and knows what to do in an emergency.
Your child CAN travel. Children with haemophilia can holiday with the family, go overseas, attend camps and so on.
Health professionals outside of Haemophilia Centres generally have little or no experience with haemophilia. It is possible that you will know more about haemophilia than your GP. As the parent, you may need to advocate for your child’s needs.
If you have any questions or are not sure of something, contact your Haemophilia Centre. The staff is always happy to help. Please don’t think your questions may seem silly – the staff understand that you are learning about haemophilia and respect that you want what is best for your child. You are entitled to ask questions.