Sickle cell disease is an inherited blood disorder that affects how oxygen moves through the body. If your child has been diagnosed with sickle cell disease, you may have a lot of questions about what it means, how it’s passed down, and most importantly, what you can do to help your child stay healthy. This guide covers the basics of sickle cell disease in children, along with practical tips for preventing a sickle cell crisis and keeping your child safe at home.

What Is Sickle Cell Disease?

Sickle cell disease is a genetic blood disorder that runs in families. Children are born with it, and it’s often first detected through a routine newborn screening test one of the most common ways sickle cell disease is diagnosed today.

To understand sickle cell disease, it helps to understand hemoglobin. Hemoglobin is the protein inside red blood cells that carries oxygen throughout the body. In children with sickle cell disease, a change in the hemoglobin gene causes hemoglobin to clump together. This causes red blood cells to become stiff and curved, shaped like a “C” or a crescent moon instead of their normal round, flexible shape.

These sickle-shaped cells don’t flow smoothly through blood vessels. They can get stuck and block blood flow, which causes pain and other complications. This is commonly known as a sickle cell crisis or sickle cell pain crisis.

How Sickle Cell Disease Is Inherited

Every child inherits one hemoglobin gene from each parent. There are two main versions relevant here:

• Hemoglobin A: the typical, “normal” hemoglobin gene
• Hemoglobin S: the gene carrying the sickle cell change

The specific combination of genes a child inherits determines their diagnosis:

• Hemoglobin SS disease: A child who inherits an S gene from both parents has hemoglobin SS disease. This is the most common and often most severe form of sickle cell disease.
• Sickle cell trait (hemoglobin SA): A child who inherits an S gene from one parent and an A gene from the other has sickle cell trait. Children with sickle cell trait typically do not have symptoms of sickle cell disease themselves but can pass the S gene on to their own children.
• Hemoglobin SC disease: A child who inherits an S gene from one parent and a C gene from the other has SC disease, a milder but still significant form of sickle cell disease.
• Sickle beta-thalassemia (Sβ-thal) disease: A child who inherits an S gene from one parent and a beta-thalassemia gene from the other has this form of sickle cell disease, which can range from mild to severe depending on the specific gene variant involved.

How Imagine Pediatrics Supports Your Child

At Imagine Pediatrics, our goal is to help your child have more Safe Days at Home. We work alongside your child’s Sickle Cell Disease team typically led by a pediatric hematologist to support the care plan they’ve built for your family. Partnering closely with your child’s specialists is one of the most important things you can do to help your child manage sickle cell disease and avoid complications.

Here are six ways to help your child stay well every day:

1. Take Prescribed Medications Every Day

Your child’s Sickle Cell Disease team or primary care provider may prescribe daily medications, including:

• Antibiotics, such as penicillin, to help prevent serious infections
• Folic acid, a B vitamin supplement that helps the body produce more red blood cells
• Medications specifically aimed at reducing the “sickling” of red blood cells

Taking these medications consistently even when your child feels well is key to preventing complications.

2. Keep Up with Scheduled Appointments

Regular visits with your child’s primary care provider and Sickle Cell Disease team are essential. During these appointments, your child may have lab work done to check hemoglobin levels and screen for early signs of complications. Your child may also be referred to specialists who monitor the eyes, kidneys, and liver, organs that can be affected by sickle cell disease over time.

3. Encourage Hydration and a Healthy Diet

Staying well hydrated helps blood flow smoothly and lowers the risk of red blood cells sickling. Encourage your child to drink water throughout the day, especially during warm weather, physical activity, or illness.

4. Support Safe, Moderate Exercise

Staying active is good for your child’s overall health, but intense or prolonged exercise can lead to dehydration and increase the risk of a sickle cell crisis. Talk with your child’s care team about safe activity levels and how to recognize signs of overexertion.

5. Protect Against Extreme Temperatures and Altitude

Cold weather and high altitudes can both trigger a sickle cell crisis. Dress your child warmly in cold conditions, and make sure they drink extra fluids when traveling to higher elevations or spending time outdoors in the cold.

6. Stay Current on Vaccinations

Children with sickle cell disease often have lower immunity than other children and face a higher risk of serious infections. Staying up to date on vaccines including pneumonia, meningitis, flu, and COVID-19 vaccines is an important layer of protection against illness and crisis triggers.

Partnering with Your Child’s Care Team

Managing sickle cell disease in children is a team effort. By working closely with your child’s Sickle Cell Disease team and following their care plan, staying on top of medications and appointments, and making small daily choices around hydration, activity, and temperature exposure, you can help reduce the frequency of sickle cell crises and support your child’s long-term health.

If you have questions about your child’s sickle cell disease care plan, reach out to your child’s Sickle Cell Disease team or your Imagine Pediatrics care team for support.

We’re Here for You and Your Child 

Imagine Pediatrics is dedicated to improving the health and lives of children with special health care needs. We provide 24/7 virtual and in-home care and support. Our integrated medical, mental, and social care is personalized to meet the needs of your child. We don’t replace your child’s current care team. We work with them to give your child more access to the specialized care they need, whenever they need it. Our services are often at no cost if they are part of your child’s existing health plan benefits. Learn more about us here or call us (833) 208-7770.

Legal Disclaimer

This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Always consult with qualified healthcare professionals for medical concerns. In case of emergency, call 911 or go to your nearest emergency room immediately.