Hemoglobin C Disease in Children

What is hemoglobin C disease in children?

Hemoglobin is the part of red blood cells that carries oxygen to cells, tissues, and organs. Hemoglobin C disease is caused by abnormal hemoglobin.

What causes hemoglobin C disease in a child?

Hemoglobin C disease is inherited. This means it's passed down from parents to children. 

A person may be a carrier, called hemoglobin C trait. They have no symptoms. Or a person may have hemoglobin C disease. Those with the disease may or may not have symptoms.

A baby born to parents who each carry the trait has a 1 in 4 chance of having hemoglobin C disease.

In the U.S., hemoglobin C is most common in African Americans. People of Caribbean, Italian, and Greek descent also have a higher risk.

What are the symptoms of hemoglobin C disease in a child?

Most people with hemoglobin C disease often don't have symptoms. But they can have low red blood counts or anemia. This can cause fatigue, weakness, pale skin, and other symptoms.

For those with hemoglobin C who have symptoms, they may include:

• Enlarged spleen

• Gallstones

• Episodes of joint pain

• Increased risk for infection

How is hemoglobin C disease diagnosed in a child?

The disorder is often found during newborn screening blood tests. Blood tests for hemoglobin C disease include:

• Complete blood count (CBC). This checks the red and white blood cells, blood clotting cells (platelets), and sometimes, young red blood cells (reticulocytes). It includes hemoglobin and hematocrit and details about the red blood cells.

• Peripheral smear. A small sample of blood is checked under a microscope to see if the cells look normal.

• Hemoglobin electrophoresis.  This test measures the different types of hemoglobin.

How is hemoglobin C disease treated in a child?

Hemoglobin C disease is a chronic condition, but it often doesn't need any treatment. The anemia that develops is mild and rarely interferes with everyday life. No special therapy, vitamins, or iron supplements are needed to treat hemoglobin C disease.

What are possible complications of hemoglobin C disease in a child?

Hemoglobin C disease often requires no special medical care. But sometimes complications can develop, including:

• Anemia that requires treatment

• Infections

• Enlarged spleen

• Gallstones

• Vision problems due to changes in the retina 

When should I call my child's healthcare provider?

Call your child's healthcare provider if you or your child has:

• Frequent or lasting infections

• Symptoms of gallstones such as pain in the upper abdomen or back, especially after eating

Key points about hemoglobin C disease in children

• Children with hemoglobin C disease usually don't have symptoms. If they do, they may have mild anemia.

• Treatment often isn't needed.

• Complications aren't common, but they can occur.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.