Aplastic anaemia in children and young people

To confirm whether your child has aplastic anaemia, doctors need to do a bone marrow biopsy.

During this test, a tiny piece of bone marrow is taken out so doctors can study it closely. Children are usually given a general anaesthetic so they sleep through the procedure and feel nothing.

Erica has shared a video talking about what her own bone marrow biopsy was like, which you may find helpful to watch.

How to explain aplastic anaemia to your child

The Aplastic Anaemia Trust has plenty of resources to help you talk to your child about aplastic anaemia, including information on common treatments and the challenges that come with them.

It is natural to want to shield your child from difficult news and worry. But staying quiet about what is happening often leaves children feeling more confused and unsettled, not less.

Talk to your child, and reassure them of these things:

• Nothing they have done caused their aplastic anaemia.
• Aplastic anaemia cannot be caught or passed on to anyone else.
• You, their family and their friends still love them just as much, and this illness has not changed that.
• You are still there, looking after them, every step of the way.

The Aplastic Anaemia Trust also has further advice and resources for both parents and children.

Treatment for aplastic anaemia in children

The treatment for aplastic anaemia in children is usually the same as adults. So, you may find some general information about aplastic anaemia treatments helpful.

Children with severe aplastic anaemia usually need a central line. This is to give medications, blood transfusions and monitor blood levels.

Aplastic anaemia is usually treated with either:

• a stem cell transplant
• immunosuppressive therapy

Children with severe aplastic anaemia are more likely to have a stem cell transplant than adults. This is because children and young people are more able to tolerate the transplant.

If your child can’t have a transplant, for example because a donor can’t be found, they may be offered immunosuppressive medicine instead. For example, anti-thymocyte globulin (ATG).

Find out about caring for a child or young person with aplastic anaemia

Children who have completed treatment for aplastic anaemia can go on to live full, happy and healthy lives.

If side effects carry on, or new issues appear later, they are often related to the medicines used during treatment. These effects are more likely if your child has had a stem cell transplant.

After treatment ends, your child will keep having regular check-ups. This way, any problems can be noticed and treated quickly. These check-ups will happen often at first, becoming less frequent as time goes on.

Some medicines and treatments can affect fertility in the longer term. Your child's doctor will discuss this with you if it may be a concern for your child. Some parents may need to decide whether to take steps to preserve their child's fertility, for example by storing sperm or eggs.

Find out about aplastic anaemia and its impact on family life.

Where to find specialised support

If you are in Scotland and your child has been diagnosed with any form of rare bone marrow failure, you can register with The Aplastic Anaemia Trust. You will receive a:

• pack of useful information
• Bravery Box containing helpful gifts and age-appropriate information booklets for your child
• planner to help you keep track of everything more easily

Please do not include personal information such as your name, location or any personal health conditions.