Frequently Asked Questions & Facts - Parents
Will my child be okay?
Yes. While haemophilia can’t be ignored, it does not have to rule your life – or your child’s. With correct treatment, your child will be okay.
As you learn more about managing haemophilia, you will become more confident.
What is haemophilia?
Haemophilia is a rare blood clotting disorder in which there are low levels of one of the essential factors, factor VIII (8) or factor IX (9), or the factor in the blood is malfunctioning. These factors help blood clot. When factor levels are significantly reduced, as in haemophilia, bleeding occurs. Cuts may take a little longer to stop bleeding and bleeding may sometimes restart. Internal bleeding into joints and muscles (bleeds) is also experienced.
How serious is it?
While haemophilia is not curable, it is most certainly treatable. With proper treatment, as outlined by your haematologist or Haemophilia Centre staff, there will be very little your child cannot do.
Your child will have a normal life expectancy.
There are a few bleeds (internal bleeding episodes), particularly into the head and throat, that can be very serious – even life threatening. A fall from a height is one of the main causes of head bleeds. Should you suspect your child has a head bleed, take your child to hospital for immediate medical attention. Chapter 3 of the Newly Diagnosed Haemophilia Folder talks more about serious bleeds.
What is the treatment?
Treatment involves injecting the missing clotting factor into a vein. Depending on how severe your child’s haemophilia is, treatment may be required every few days to prevent bleeds from occurring (this is called prophylaxis) or just whenever he has a bleeding episode (on demand). Your haematologist or Haemophilia Centre will tell you more about the right treatment for your child. Chapter 4 of the Newly Diagnosed Haemophilia Folder discusses treatment in more detail.
How will it change our lives?
Haemophilia will mean that you will need to make some changes to your life. However, it shouldn’t alter everything you and your family do, and most importantly you should always treat your child as a little boy or girl first, and a child with haemophilia second.
As your child grows, so will your understanding of haemophilia and how to manage it.
What can I expect?
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.
What does mild, moderate and severe haemophilia mean?
Your haematologist will have told you whether your child’s haemophilia is mild, moderate or severe. This is directly related to the percentage of factor VIII (8) or IX (9) in the blood. Knowing factor levels will help determine appropriate treatment and can give you some guide as to what you can expect. In general, people with severe haemophilia can expect more frequent bleeds.
However, each individual is unique and sometimes people with mild haemophilia can have more bleeds than expected, while people with severe haemophilia may have relatively few bleeding episodes. Over time, you will become familiar with your child’s bleeding patterns and be able to predict what is likely to cause a bleed.
How did my child get haemophilia?
Haemophilia is caused by a change (mutation) in the genes. Once a gene has mutated, the change is passed on to future generations through pregnancy. Inheritance is discussed further in chapter 2 of the Newly Diagnosed Haemophilia Folder.
Most people with haemophilia have a family member who also has haemophilia. However, around a third of children born with haemophilia have no previous family history of the condition.
Did I do something wrong during pregnancy to cause this?
No, certainly not. Haemophilia is caused by changes in the genes that are beyond our control. Drinking alcohol, smoking, taking drugs and so on during pregnancy do not cause haemophilia.
Haemophilia is caused by genetic changes beyond your control. There is nothing you or your partner could have done to prevent your child having haemophilia.
Will it go away?
Haemophilia is a lifelong condition. It will not just go away. It can, however, be treated effectively.
The severity of haemophilia (i.e. mild, moderate, and severe) does not change and runs true in families. If your father has mild haemophilia, your child will too.
Is haemophilia contagious?
No. People do NOT get haemophilia from living with, being near or sharing a meal with a person with haemophilia. It is only passed on through genetics.
Will my other children have haemophilia?
You may ‘carry’ the gene responsible for haemophilia. In this case, your other children may have haemophilia also. There are tests available to determine whether a woman carries this gene. Your Haemophilia Centre will be able to tell you more about these tests.
What do I do when my child has a bleed?
Your treating doctor or Haemophilia Centre will have outlined what to do in the event of a bleed.
How common is haemophilia?
Haemophilia affects 1 male in 5,000 (or 1 person in 10,000 in the general population). Haemophilia is rare, which explains why you may not have known much about it before you found out your child has the disorder.
Haemophilia A is approximately five times more common than haemophilia B.
Can girls have haemophilia?
Females can ‘carry’ the gene responsible for haemophilia and some may have a bleeding tendency. These females are called ‘symptomatic carriers’. It is very rare for a female to have severe haemophilia. However, some females have factor levels in the range for mild haemophilia (5-40% of normal clotting factor) and may also be described as having "mild haemophilia".
Do NOT give your child aspirin
People with haemophilia should NOT take aspirin as it promotes bleeding. Paracetamol is a suitable alternative.
Some prescription medications and over-the-counter chemist preparations contain aspirin. Cold and flu medications are one example. If your child is given a prescription, or if you purchase an over-the-counter medication, check whether it is suitable for a person with haemophilia. Your clinician or pharmacist will be able to advise you on suitable products.
Important Note: This information was developed by Haemophilia Foundation Australia for education and information purposes only and does not replace advice from a treating health professional. Always see your health care provider for assessment and advice about your individual health before taking action or relying on published information.
This information may be printed or photocopied for educational purposes.