Talking With Your Child About Sickle Cell Disease

Helping your child understand sickle cell disease can help them cope better with treatment. It is important to tell your child about their sickle cell disease. Answer their questions in honest, simple terms.

Talking with your child about sickle cell disease can be scary if you are not sure what to say. These tips can help you have important conversations.

Use the right words for your child’s age

Toddler

Toddlers are learning about their body parts. They might not know about sickle cell disease yet. You can tell your child that they come to the hospital for checkups. You could say something like, “You go to the hospital for a checkup to see how your body is working.”

Preschool and early school age

Children this age are beginning to understand more. You can tell them that they need checkups to see how their body is working. You can also explain these checkups are to help them stay healthy.

School age

Many children are learning about cells at this age. They know that cells make up their bodies. You can use this to help your child understand sickle cell disease.

You might say something like this to explain sickle cell disease:

“Red blood cells are an important part of your blood. They carry oxygen through your body to give you energy. Red blood cells are round so they can move through your body and carry as much oxygen as possible. When you have sickle cell disease, some of the round red blood cells change into a banana shape. They cannot carry as much oxygen, and they can get stuck at different places in your body. This can hurt.”

Teens

Teens can often understand what the medical team is saying. It is important to include them in medical discussions. They can also learn the correct medical terms for their illness and treatment.

Encourage open conversation about sickle cell disease

Talking with your child about their treatment can help them adjust to having sickle cell disease.

• Avoid saying that your child comes to the doctor because they are sick. Telling a child that they are sick when they feel healthy can be confusing. Young children might start to think they are always sick.
• Get your child ready for needle sticks. You can say something like, “The doctors will need to take a small amount of blood when we are at the hospital, so they can learn how your body is working.”
• Make sure your child understands that sickle cell disease is not a punishment. Nothing your child did, or did not do, caused sickle cell disease. Some children are born with sickle cell disease.
• Remember that your child hears and understands a lot. By age 3, children are speaking in short sentences and can understand a lot. Talking to your child about their illness can bring up many questions. It also gives them a chance to talk with you about their fears.

Your child’s care team can help

Your child’s care team can help with these conversations. They can help your child understand treatment and adjust to being in the hospital. They can also help you find ways to talk to your child and the right words to say.