Haemophilia is a life-long bleeding disorder where the blood does not clot properly. It is caused by not having enough of a single blood-clotting protein (clotting factor VIII [8] or clotting factor IX [9]) in the blood. Haemophilia can be mild, moderate or severe depending on the level of clotting factor in the blood.
Haemophilia is rare and mostly affects males and most children with haemophilia can lead healthy and active lives.
Signs and symptoms of haemophilia
Symptoms can vary depending on the severity of haemophilia and where the bleeding is.
Symptoms of haemophilia can include:
- internal bleeding (bleeding inside the body)
- large or deep bruising, which is usually noticed when an infant starts to roll and crawl
- bleeding into joints and muscles which causes swelling, pain and trouble using the affected area (usually an arm or leg)
- bleeding from the mouth (after injury)
- nosebleeds that are difficult to stop
- bleeding in the brain
A child with haemophilia will not bleed faster than a child without haemophilia, but will likely bleed for a longer period of time, meaning they may bleed more.
Children with mild haemophilia usually only have bleeding problems after surgery, having a tooth removed or after a major injury.
Children with severe haemophilia can develop bleeding or ‘a bleed’ for no obvious reason and without a known injury. Young children with a joint or muscle bleed due to haemophilia might be unsettled or refuse to crawl or walk.
Bleeding in the brain can cause vomiting, sleepiness, or
seizures. If your child develops these symptoms or has a head injury, seek medical advice immediately and call 000.
First aid for haemophilia
Use standard first aid principles:
- apply firm pressure to cuts and grazes
- apply pressure to nostrils for nose bleeds
- apply P.R.I.C.E. (Protect, Rest, Ice, Compression, Elevation) for joint or muscle bleeds
When to see a doctor
If you think your child has symptoms of haemophilia, take them to their GP for a blood test to check for a bleeding disorder. Your child might need more blood tests and be referred to a Haemophilia Treatment Centre (HTC) to confirm a diagnosis.
If you have a history of haemophilia in your family, you can contact your nearest HTC for more information.
Children under the care of a HTC will have a management plan that includes who to contact for advice and when to attend hospital.
Seek help immediately by calling an ambulance if:
- your child suffers a major injury
- your child loses consciousness (passes out)
- your child seems unwell and vomits after a knock to the head
- your child has a seizure (fit)
Treatment for haemophilia
Treatment depends on the type and severity of haemophilia and the type of bleeding, injury or surgery. It can take place in the hospital or at home.
Treatment may include:
- replacing the missing clotting factor by injecting it into a vein
- giving a medication through an injection under the skin
- making blood clots stronger by taking a tablet, which can be effective for bleeding from the mouth, nose and for heavy periods
- raising the body’s own clotting factor by injecting a hormone called Desmopressin (also known as DDAVP)
Children with mild haemophilia usually only need treatment when they have surgery, a tooth removed or after a major injury. Most children with severe haemophilia will require regular treatment from a young age to prevent and treat bleeding.
Care at home
Most children with severe haemophilia start regular treatment from a young age to prevent and treat bleeding. Young children may have a ‘port’ (a device used to draw blood and give treatments in their veins) inserted if they require clotting factor treatment and their veins are hard to find. Families can learn to give treatment at home with the support of their HTC.
If your child has attended the emergency department for a bleed, you will be given instructions how to care for your child at home and when to attend the HTC for follow up. After a joint or muscle bleed, your child might need to rest, reduce activity and see the haemophilia physiotherapist for exercises and rehabilitation.
Children with haemophilia should not take aspirin or ibuprofen. Paracetamol is safe to use.
What causes haemophilia
Haemophilia is caused by a change in the genes that make clotting factor. Once a gene has changed, it 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.
Follow-up
Children diagnosed with haemophilia will have regular appointments at their HTC. Children with mild haemophilia are usually seen once per year. Children with severe haemophilia are seen more frequently.
After an injury, bleed or surgery you will be given instructions for any follow up treatment or rehabilitation.
If your child has haemophilia and needs to have a procedure, dental work or surgery, you should contact your HTC for a plan.
Key points to remember
- with effective treatment, most children with haemophilia can lead healthy and active lives
- there are Haemophilia Treatment Centres (HTC) in every state and territory that provide comprehensive care for children with inherited bleeding disorders such as haemophilia
- a child with haemophilia will NOT gush blood from a simple cut or injury, standard first aid measures apply
- if children with haemophilia have a knock to the head or major injury seek medical advice immediately or call an Ambulance by calling 000
For more information
Common questions our doctors are asked
Will my child have a normal life expectancy if they are diagnosed with haemophilia?
Yes, your child will have a normal life expectancy and will be able to do most things that other children their age can do.
Will my child be able to play sport?
Physical activity is encouraged for children with haemophilia. Exercise is important for physical and mental health and can help prevent bleeds by strengthening joints and muscles. Some sports are not recommended. Your HTC will provide more guidance about what sports are appropriate for your child.
Do clotting factor concentrates come from donated blood supply?
Most clotting factor concentrates used in haemophilia are artificial and do not come from the blood supply. Some clotting factor concentrates are made from human blood plasma and are collected and created with very high safety standards.
Developed by The Royal Children's Hospital Clinical Haematology department. We acknowledge the input of RCH consumers and carers.
Reviewed January 2021.
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