If your child has a bleeding disorder…

That’s a big thing, and you may be worried about what it all means. There can seem to be so many things to know about bleeding disorders – what they are, what the symptoms are, how they’re treated, and who’s there to help.

Here are three key things you need to know right now:

1. Your child will be okay.
2. With the right treatment and care, bleeding disorders are 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.

Some aspects of your life may have to change, but most things you do with your family will remain the same. While a bleeding disorder can’t be ignored, it doesn’t have to rule your life – or your child’s. Remember, first of all your child is a regular little boy or girl, they’re a child with a bleeding disorder second. As your child grows, so will your understanding of the bleeding disorder, and your confidence in how to manage it – and it will be the same for your child. Your Haemophilia Treatment Centre (HTC) is always available to offer advice whenever you need it. HFNZ can also provide information and support and connect you to other parents. You are not alone.

For information on specific bleeding disorders, check out our About bleeding disorders page.

First signs of a bleeding disorder

If children have a bleeding disorder it is usually diagnosed when they are babies or toddlers. This may be because there is a family history of bleeding disorders, or sometimes a parent or health professional notices unusual bruising or bleeding. If there is internal bleeding or unusual swelling or bruising after delivery, bleeding continues after a heel prick test, or there is excessive bruising or swelling after immunisation, a bleeding disorder could also be the culprit.

The most common first signs of a bleeding disorder are:

• unexplainable recurrent bruises and unusual looking lumps
• significant bruising or swelling after injections (e.g. immunisations). The bruise may feel quite lumpy and there may be hesitation in using an arm or leg (e.g. limping)
• frequent crying when an arm or leg is touched or moved
• warmth and swelling of a joint
• persistent bleeding after surgery or blood tests, including the heel prick test after birth.

Children with a bleeding disorder often don’t have bleeding problems at birth. However, in some cases bleeding problems do appear at birth or soon after. If a bleeding disorder runs in your family, a birth plan should be put in place to minimise potential bleeding problems.

What can I expect?

Every child will have their own individual experience with their bleeding disorder.

• 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.
• Bleeds are usually caused by an injury, but sometimes they appear to happen for no obvious reason.
• 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. Some bleeds, including head and throat bleeds, should be treated as emergencies.
• Do NOT give your child aspirin or ibuprofen as this may worsen their bleeding tendency.
• The frequency of treatment with factor (factor replacement therapy) depends on the severity of your child’s bleeding disorder, their tendency to bleed and the type of factor replacement therapy they are using.
• 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 local HTC. They are always happy to help you.

Who can help my child, my family, and me?

Your local Haemophilia Treatment Centre (HTC) team has expertise in dealing with bleeding disorders and helping patients and their families at various stages of a child’s life.

The HTC team includes:

• haematologists (doctors specialising in blood disorders)
• specialist haemophilia nurses
• physiotherapists
• specialised laboratory services
• access to other specialised health professionals as required.

Treatment and care of children with a bleeding disorder involves a team of specialist health professionals to cover all their care needs. This is known as ‘comprehensive care’. Your HTC coordinates comprehensive care for your child. There are six HTCs around New Zealand, which are located in public hospitals in Auckland, Hamilton, Palmerston North, Wellington, Christchurch, and Dunedin.

The HTC team will refer your child to other specialists or health professionals, as appropriate, and liaise with other important partners in your child’s care such as your GP or your child’s paediatrician. Key aspects of your child’s treatment and care are diagnostic services (such as blood tests, scans, and X-rays), factor replacement therapy, and rehabilitation and physiotherapy services.

In New Zealand, psychosocial support for people with bleeding disorders is offered by HFNZ. We have four Outreach Workers, based in Auckland, Hamilton, Wellington, and Christchurch. To find out more, or to contact your local Outreach Worker, visit the Outreach Services page.

• Treatment and care for children with a bleeding disorder involves a team of specialist health professionals.
• Factor replacement therapy can be given on demand or regularly (‘prophylaxis’) and can be administered in the hospital or at home.
• Paracetamol and the PRICE treatment method can help ease the pain of bleeds and reduce ongoing complications. You can download a copy of the PRICE regimen here.
• If you are unsure whether to take your child to hospital for a bleed, contact your Haemophilia Treatment Centre immediately for advice. Out of hours there will always be an on-call haematologist contactable via the hospital switchboard.
• Do NOT give your child aspirin or ibuprofen as this could worsen their bleeding tendency.

Letting kids be kids

It’s normal to feel anxious when handling a baby with a bleeding disorder, or to be concerned as they become more mobile. You can help your child to become willing and able as they grow by supporting their normal development and avoiding being overprotective. Showing physical affection to your child is a great way of letting them feel safe and loved. Hugging, holding, or patting won’t cause your child any harm. As your child grows, it’s important to let them move around and explore their world freely, as any other child would. This is how children learn, grow, and begin to make independent decisions. Letting your child move freely also develops their balance and movement and coordination skills, which will assist with joint protection while encouraging healthy weight and fitness. As you learn more about your child’s bleeding disorder, you will become more relaxed knowing that your child will grow and develop just like any other child.

Remember:

1. As your child grows, it is important to let them move around and explore their world freely, as any other child would.
2. Warm, calm, positive, consistent, and caring interactions and messages are at the heart of a child’s healthy development.
3. Be understanding of other people’s feelings and reactions to your child’s bleeding disorder. People will react in different ways.
4. Children with a bleeding disorder can be left with babysitters or carers, travel and attend school camps, just like other children.

Much of the content of this page is adapted from the Haemophilia Foundation of Australia’s excellent booklet: Haemophilia: a guide for parents of a newly diagnosed child