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FAQ – Parents

Frequently Asked Questions & Facts – Parents

Q: Will my child be okay?

A. Yes your child will be okay. While Hemophilia 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 Hemophilia, you will become more confident.

Q: What is Hemophilia?

Hemophilia 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 Hemophilia, 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.

Q: How serious is it?

While Hemophilia is not curable, it is most certainly treatable. With proper treatment, as outlined by your hematologist or Hemophilia 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.

Q: What is the treatment?

A: Treatment involves injecting the missing clotting factor into a vein. Depending on how severe your child’s Hemophilia 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 hematologist or Hemophilia Centre will tell you more about the right treatment for your child.

Q: How will it change our lives?

A: Hemophilia 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 Hemophilia second.
As your child grows, so will your understanding of Hemophilia and how to manage it.

Q: What can I expect?

A: Each person with Hemophilia 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 Hemophilia 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 Hemophilia 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 Hemophilia 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 Hemophilia 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 Hemophilia and knows what to do in an emergency.

Your child CAN travel. Children with Hemophilia can holiday with the family, go overseas, attend camps and so on.

Health professionals outside of Hemophilia Centers generally have little or no experience with Hemophilia. It is possible that you will know more about Hemophilia 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 Hemophilia 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 Hemophilia and respect that you want what is best for your child. You are entitled to ask questions.

Q: What does mild, moderate and severe Hemophilia mean?

A: Your haematologist will have told you whether your child’s Hemophilia 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 Hemophilia can expect more frequent bleeds.

However, each individual is unique and sometimes people with mild Hemophilia can have more bleeds than expected, while people with severe Hemophilia 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.

Q: How did my child get Hemophilia?

A: Hemophilia is caused by a change (mutation) in the genes. Once a gene has mutated, the change is passed on to future generations through pregnancy.
Most people with Hemophilia have a family member who also has Hemophilia. However, around a third of children born with Hemophilia have no previous family history of the condition.

Q: Did I do something wrong during pregnancy to cause this?

A: No, certainly not. Hemophilia 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 Hemophilia.

Hemophilia is caused by genetic changes beyond your control. There is nothing you or your partner could have done to prevent your child having Hemophilia.

Q: Will it go away?

A: Hemophilia is a lifelong condition. It will not just go away. It can, however, be treated effectively.

The severity of Hemophilia (i.e. mild, moderate, and severe) does not change and runs true in families. If your father has mild Hemophilia, your child will too.

Q: Is Hemophilia contagious?

A: No. People do NOT get Hemophilia from living with, being near or sharing a meal with a person with Hemophilia. It is only passed on through genetics.

Q: Will my other children have Hemophilia?

A: You may ‘carry’ the gene responsible for Hemophilia. In this case, your other children may have Hemophilia also. There are tests available to determine whether a woman carries this gene. Your Hemophilia Centre will be able to tell you more about these tests.

Q: What do I do when my child has a bleed?

A: Your treating doctor or Hemophilia Centre will have outlined what to do in the event of a bleed.

Q: How common is Hemophilia?

A: Hemophilia affects 1 male in 5,000 (or 1 person in 10,000 in the general population). Hemophilia is rare, which explains why you may not have known much about it before you found out your child has the disorder.
Hemophilia A is approximately five times more common than Hemophilia B.

Q: Can girls have Hemophilia?

A: Females can ‘carry’ the gene responsible for Hemophilia and some may have a bleeding tendency. These females are called ‘symptomatic carriers’. It is very rare for a female to have severe Hemophilia. However, some females have factor levels in the range for mild Hemophilia (5-40% of normal clotting factor) and may also be described as having “mild Hemophilia”.

Q: Do NOT give your child aspirin

A: People with Hemophilia 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 Hemophilia. Your clinician or pharmacist will be able to advise you on suitable products.