Newly diagnosed

young brothers with haemophilia
Your child has haemophilia. These four words have most likely echoed through your mind over and over again since your child was diagnosed.
 
There are so many things to know about haemophilia – what it is, what the symptoms are, how it’s treated and who’s there to help.
 
Here’s three things you need to know right now:
  1. Your child will be okay.
  2. With appropriate treatment and care, haemophilia is manageable.
  3. Your child will have a normal life expectancy and will be able to do most things that other children their age can do.
You will need to make some adjustments to your life but most things you do with your family will remain the same. While haemophilia can’t be ignored, it does not have to rule your life – or your child’s. Remember always to treat your child as a little boy or girl first, and a child with haemophilia second.
 
Rest assured that as your child grows, so will your – and your child’s – understanding of haemophilia and your confidence in how to manage it.
 
Your Haemophilia Treatment Centre (HTC) is always available to offer advice whenever you need it. Haemophilia Foundations can also provide information and support and connect you to other parents. You are not on your own.
 
Date last reviewed: October 2017

What you need to know now


“Once I learnt more about haemophilia I became more comfortable.”

What is haemophilia?


Haemophilia is a rare bleeding disorder in which there are low levels of one of the essential clotting factors, factor VIII (8) or factor IX (9). These factors are components (proteins) that help blood to clot. 

There are two types of haemophilia, both with the same symptoms:
  • Haemophilia A - factor VIII (8) deficiency
  • Haemophilia B - factor IX (9) deficiency
When factor levels are significantly low, bleeding problems can occur. Your child may have more bruising and bigger bruises, often lumpy, and may have bleeding (e.g. from the mouth) that stops and restarts.  They may also experience internal bleeding into joints and muscles (commonly referred to as ‘bleeds’).
 

How serious is it?


While haemophilia is not curable at present, it is most certainly treatable. Your child will have a normal life expectancy and be able to do most things that a child without haemophilia enjoys.

Your HTC team will guide you and your child throughout life to manage factor levels and discuss their development and their involvement in sports and activities as they grow. 

Alert!Some bleeds can be very serious – even life threatening – if not treated appropriately. Bleeds to the head, throat and stomach should be treated as emergencies. If you suspect your child has a head, throat or stomach bleed, take your child to hospital for immediate medical attention and contact your HTC

See Chapter 3 of the HFA Haemophilia Guide for parents for more information on serious bleeds.

How did my child get haemophilia?


Haemophilia is caused by a change (mutation) in the genes. Once a gene has altered, the change may be passed on to future generations. Often 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. 

See Chapter 2 of the HFA Haemophilia Guide for Parents for more information on inheritance.

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. There is nothing you or your partner could have done to prevent your child having haemophilia. 

What does mild, moderate and severe haemophilia mean?


Haemophilia can be mild, moderate or severe. The level of severity is directly related to the percentage of factor VIII (8) or IX (9) in the blood. 

Knowing the factor levels helps to determine the appropriate treatment and can give you a guide as to what you can expect. In general, people with severe haemophilia can expect more frequent bleeds.

Each person’s experience with haemophilia is unique. Over time, you will become familiar with your child’s bleeding patterns and be able to predict what is likely to cause a bleed. As they get older, you can ask them about their symptoms.

See Chapter 2 of the HFA Haemophilia Guide for Parents for more information on mild, moderate and severe haemophilia.

Is haemophilia contagious?


No. People do NOT get haemophilia from living with or being near a person with haemophilia. It is only passed on through genetics.

Will it go away or change?


Haemophilia is a lifelong condition. However, it can be managed effectively.

The severity of haemophilia (mild, moderate or severe) does not change over a lifetime.

Within a family, males with haemophilia will nearly always have the same level of severity. 

However, the factor level for females who ‘carry the gene’ is unpredictable and the level of severity can vary between family members. For example, a man with severe haemophilia who passes it on to all his daughters may have one daughter with mild haemophilia and another daughter who has inherited the gene but has normal factor levels and no bleeding problems.
 

Will my other children have haemophilia?


If you are a woman, you may carry the altered gene that causes haemophilia. In this case, some of your children may also inherit haemophilia or some of your daughters may carry the gene. 

A man with haemophilia will pass the gene on to all his daughters, but not his sons.

See Chapter 2 of the HFA Haemophilia Guide for Parents for more information on inheritance patterns.

Haemophilia Treatment CentreThere are tests available to determine whether you or your partner have the gene for haemophilia. Your HTC can provide you with more information and advice about these tests. You can also be referred to a genetic counsellor if required.

What is the treatment?


Treatment and care for children with haemophilia involves a team of specialist health professionals to cover their range of care needs. This is known as ‘comprehensive care’. 

Key aspects of your child’s treatment and care are diagnostic services (such as blood tests, scans and X-rays), factor replacement therapy, physiotherapy and rehabilitation, and psychosocial support. 

Each child has different needs and their care and treatment will reflect what is best for them as an individual. Your HTC or health professional will advise on the best treatment for your child.

See Chapter 4 of the HFA Haemophilia Guide for Parents for more information on treatment.


What is factor replacement therapy?  


Factor replacement therapy involves injecting the missing clotting factor into a vein or ‘port’ (a temporary device inserted under the skin to access the vein). Depending on how severe your child’s haemophilia is, treatment may be required up to a few times per week to prevent bleeds from occurring (this is called ‘prophylaxis’) or whenever they have a bleeding episode (this is called ‘on demand’). Your haematologist or Haemophilia Treatment Centre will discuss the appropriate treatment for your child with you. 

See Chapter 4 of the HFA Haemophilia Guide for Parents for more information on treatment.

How will I know when my child has a bleed?

Your HTC or treating health professional will provide you with individual medical advice on how to recognise and manage a bleed. 

See Chapter 3 of the HFA Guide for Parents for more information on bruises and bleeds.

See Chapter 4 of the HFA Guide for Parents for more information on treatment.

Haemophilia Treatment CentreIf you are ever uncertain whether your child is having a bleed, contact your HTC for advice and support



 
Date last reviewed: October 2017

What can I expect?

little cousins with haemophilia
Every child will have their own individual experience with haemophilia. 
  • Babies usually have very few problems, with the exception of babies who require a medical procedure or have surgery such as circumcision. As your child becomes mobile, there may be more bruises and bleeds. 
  • Your child will be able to do most things that other children their age can do. 
  • Your child will be able to be cared for by babysitters, attend child care, preschool and participate in the normal school environment. You will just need to make sure that whoever is in charge knows about your child’s haemophilia and what to do in an emergency.
  • Your child can travel. 
  • Bleeds need to be treated promptly. 
  • The frequency of treatment with factor (factor replacement therapy) depends on the severity of your child’s haemophilia, their tendency to bleed and the type of factor replacement therapy. 
  • Treatment is initially given in hospital. If your child requires regular treatment (prophylaxis) and you are comfortable to do so, you can learn to provide treatment at home.
If you have questions at any time, don’t hesitate to contact the team at your HTC. They are happy to help you.  
Date last reviewed: October 2017

Who can help me, my family and my child?


Your Haemophilia Treatment Centre (HTC) team has expertise in dealing with haemophilia and helping patients and their families at various stages of a child’s life. The team includes the haematologist (specialist doctor), nurse, physiotherapist and a psychosocial professional who could be a psychologist, social worker or counsellor. 

Haemophilia Foundations are national and state/territory community organisations that provide information and support and can connect you to other parents.

Read more about the support available to you:

Read chapter 1 of the HFA Guide for Parents for more information on support

Read chapter 4 of the HFA Guide for Parents for more information about HTCs and comprehensive care
 
Date last reviewed: October 2017
Haemophilia guide for parents of a newly diagnosed child

See the HFA Haemophilia: a guide for parents of a newly diagnosed child for more information on frequently asked questions by parents.

Our guide has been developed to help parents understand all the issues they will encounter when their child is diagnosed with haemophilia. It was designed with the input of parents of small children with haemophilia and includes their tips and helpful comments about their experiences.

It includes:
  • downloadable fridge cards with an emergency checklist and how to recognise a bleed
  • explanations about haemophilia, what causes it, symptoms and severity
  • inheritance, families and having children
  • managing and preventing bruising and bleeds, treatment
  • growing up, child care, going to school, siblings
  • exercise and sport
  • support and services

Date last reviewed: October 2017


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.