Intracranial bleeds in children with bleeding disorders

This resource contains information for carers of children with a severe bleeding disorder. For example, severe haemophilia A, B, other severe factor deficiencies and platelet disorders like Glanzmann’s thrombasthenia.

How to recognise a possible brain bleed

You have been told that your child has a severe bleeding disorder. One of the very rare, but most serious bleeding problems that can happen is bleeding into their brain. This information is to help you to recognise signs that this might be happening and how to seek appropriate medical help.

Does bleeding into the brain happen very commonly?

No, it is a very rare problem, even in children with severe bleeding disorders.

What are the signs of a bleed into the head in a baby or toddler?

You should look out for the following signs in your child:

• not feeding as well as usual
• sleepiness or lethargy even with normal sleep pattern. Babies in first few weeks of life should not be left to sleep for more than 4 hours.
• abnormal movements or fits and seizures such as, jerky or repetitive movements of their arms or legs
• prolonged crying or other signs of obvious distress (not settling)
• extremes of temperature, for example fever or unusually cold hands and feet
• fast breathing or breath holding
• changes in vision, such as being unable to look at and follow on a favourite toy or unable to open one or both eyes
• bruising on the face or head
• vomiting

Some of these symptoms happen frequently in babies and are often due to something other than a bleed but in combination they can be more significant.

The signs of a bleed can be vague and non-specific but we would always encourage you to contact us with any concerns you may have.

What are the signs of a bleed into the head in an older child?

Your child may tell you that they do not feel well but you should look out for:

• vomiting
• sleepiness or difficulty waking them from sleep
• change in vision
• headache
• weakness on one side of the body, such as not being able to lift one arm or leg
• pins and needles
• speech difficulties or changes
• behaviour change
• abnormal movements or sudden clumsiness
• dizziness or unsteadiness on their feet

Can a bleed happen even if my child has not had an injury to their head?

In some cases bleeding may be associated with a bump to the head but it can happen with no injury. If you child develops the signs described in this resource or you are concerned you should contact us immediately even if your child has not hit their head.

My child has hit their head, what should I do?

If it was just a small bump to the head and your child seems ok then you should keep an eye on them for any of the signs described. If the injury was more serious for example, fall from a height, hit over the head with something hard, or if there is a large swelling, or a swelling that has increased in size then you should contact us even if they seem okay as they may need checking over and may need some treatment to prevent a bleed.

What should I do if I am worried?

If your child has any of the symptoms listed, or has had a head injury you should call us for advice. It is our job to decide if your child needs further assessment.

If your child is unresponsive (not waking up) or you think they are having a fit (repetitive shaking of arms or legs) you must call 999 immediately.