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Talking about sickle cell disease

 

Helping your child understand sickle cell disease, or SCD, can help them cope better with treatment. This includes coping with needle sticks that are part of SCD treatment.

It is important to tell your child about their SCD and answer questions in honest, simple terms. This helps them grow up understanding why they come to the hospital so often. Talking with your child about SCD can be scary if you are not sure what to say. The ideas in this article might help you talk with your child about SCD.

Use the right words for your child’s age

Toddler

Toddlers are just learning about their body parts and might not know about SCD yet. It is OK to 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

If your child is in this age group, you can tell them that the St. Jude doctors want to see how their body is working and help them stay healthy.

School age

Many children are learning about cells at this age. They know that their bodies are made up of cells. You can use this to help your child understand SCD. You might say something like, “Red blood cells are an important part of your blood. They carry oxygen through your body to give you energy. Normally, red blood cells are round so they can move quickly 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 can’t carry as much oxygen, and they can get stuck at different places in your body. This can hurt.”

Teens

 These older patients can often understand what the medical team is saying. It is important to talk about the things that are said during medical discussions. They can also learn the correct medical terms for their illness and treatment.

Child Life can help

A St. Jude child life specialist is one of your child’s health care team members. 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.

Important tips

  • 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. Before you come to the hospital, 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 SCD is not a punishment. Nothing your child did, or didn’t do, caused SCD. Some children are born with SCD.
  • Remember that your child hears and understands a lot. Children understand what you say before they can say the information themselves. 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. Talking freely with your child about coming to the hospital and their treatment can help them adjust to having SCD.

Questions?

The child life staff can help your child understand sickle cell disease and adjust to being at St. Jude. They can also provide your child with activities to make the hospital as normal as possible.

To learn more about talking with your child about SCD, call the Child Life department at 901-595-3020. If you are inside the hospital, dial 3020. If you are outside the Memphis area, call toll-free 1-866-2STJUDE (1-866-278-5833), extension 3020. 


 

This document is not intended to take the place of the care and attention of your personal physician or other professional medical services. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your physician.

St. Jude complies with health care-related federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.

ATTENTION: If you speak another language, assistance services, free of charge, are available to you. Call 1-866-278-5833 (TTY: 1-901-595-1040).

ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-866-278-5833 (TTY: 1-901-595-1040).

تنبيه: إذا كنت تتحدث باللغة العربية فيمكنك الاستعانة بخدمات المساعدة اللغوية المتوفرة لك مجانا. .يرجى الاتصال بالرقم. 5833-278-866-1  (الهاتف النصي: 1040-595-901-1).