As soon as your child’s bleeding disorder is diagnosed, you should be put in contact with your local haemophilia centre. Staff will arrange regular review appointments and give you advice on how to spot and treat a bleed, and what to do in an emergency.
How to spot a bleed
The type and severity of bleeding that your child experiences will depend on what bleeding disorder he or she has. Bleeding and bruising from cuts are common in von Willebrands and are easy to spot. But with more severe bleeding disorders (especially haemophilia) people bleed into their joints or muscles without even injuring themselves. In time, an alarming darkly-coloured bump under the skin may form, which may cause a joint (such as an ankle, knee or elbow) to swell considerably. Before you can see any sign, your child may be in a lot of pain. They may not tell you that they are hurting, because they’ve learned that a bleed means stopping whatever they are doing. Look out for a difference in the way they use their left and right legs, or arms and hands. They might describe a heat feeling or tingling sensation.
Bleeding inside the skull is always an emergency that requires immediate hospital treatment. Your child may have a severe headache, display signs of drowsiness, feel or be sick, move oddly and could lose consciousness.
Allegations of non-accidental injury
Bruising is common across a wide range of bleeding disorders. As well as being alarming for your child, you might be accused of child abuse. General information such as this handbook, or a letter from your doctor, will help if you’re investigated by social services.
Leaving your child in others’ hands
Childminders, nurseries and schools can be reluctant to look after a child with a bleeding disorder because of an irrational but understandable fear of the consequences of a bleed. Educational materials such as this handbook and a visit from your haemophilia nurse can help put their minds at ease. If they still refuse to take charge of your child they risk falling foul of disability discrimination regulations within the UK-wide Equalities Act 2010.
A common but understandable reaction to caring for a child with a bleeding disorder is to be over-protective, taking extreme steps to avoid any injury that might cause a bleed. This can mean the child misses out on playing with friends and enjoying healthy activities, which would actually make joints stronger and helps prevent bleeds. Wearing a helmet and other protection is rarely recommended (unless on a bike, scooter etc.), but your haemophilia centre’s medical team can always advise.
When the treatment is working well, Haemophilia Scotland recommends you aim for your child to enjoy most activities that their friends take part in, and to lead a healthy and active life (see p 17).
Children can learn to help prepare their treatment and, in time, self-inject it at a surprisingly early age. This is often the first step in learning to become more independent in managing their own bleeding disorder. As they grow older, they will become more expert in their illness and better at spotting and managing a bleed. On leaving home and having transitioned from a children’s to an adult’s haemophilia centre, the medical team will further support them to become independent and increase their confidence.
How to spot a joint or muscle bleed
With a joint bleed, it may not be obvious at the start, so look out for the joint becoming hot, swollen and tender, or the person saying they feel tingling, pain or stiffness. If they can’t, or don’t want to, talk about what they are feeling, then look out for visual signs of discomfort and different-sized arms or legs, difficulty in movement, or them avoiding using that arm or leg.
Muscle bleeds are most often in the calves, forearms, bottom, thighs and groin. They also cause swelling and pain.
How to spot a stomach/gastrointestinal or urinary tract bleed
● Bloody or black tar-like poo
● Red or brown urine
How to spot a head bleed
● severe headache
● stiff neck
● change in mental state, such as confusion
● speaking difficulties, such as slurred speech
● changes in vision, such as double vision
● loss of co-ordination and balance
● paralysis of some or all of the facial muscles
Even if you haven’t witnessed any injury, and can’t see any obvious lumps or bruising, treat it as an emergency.