Sickle cell and hemoglobin trait information for parents
In California all babies are screened for hemoglobin and other rare disorders shortly after birth. The screening method also identifies healthy babies with hemoglobin traits.
This means that a baby’s red blood cells have a different kind of hemoglobin along with the usual kind. Having a hemoglobin trait is not a disease. It will never change into disease.
The most important thing to know is that if a baby has a hemoglobin trait, at least one of the parents has a hemoglobin trait. If both parents have a trait, this can result in a future baby having a hemoglobin disease, such as sickle cell disease.
Newborn Screening Hemoglobin Trait Follow-up Program
A newborn screening result may show that a baby has a hemoglobin trait: either sickle cell (S) trait, hemoglobin C trait, or hemoglobin D trait.
Parents can learn more information about traits and free family testing by calling the Newborn Screening Hemoglobin Trait Follow-up Program at 1 (866) 954-2229. All trait services are voluntary, free, and confidential.
Parents can leave their name, phone number, and email address. A counselor from the Sickle Cell Disease Foundation will contact the parent. Counselors speak English and Spanish.
What is hemoglobin?
Hemoglobin is a protein found in red blood cells of all people. It gives blood its red color and takes oxygen to all parts of the body. There are many types of hemoglobin. Hemoglobin A is the most common.
What is a hemoglobin trait?
Hemoglobin traits are inherited conditions present at birth. Hemoglobin traits are passed down from parent to child in genes. Genes are in the body’s cells. They carry information that sets the qualities passed on to a child from parents, like height.
One parent must have a gene for the usual hemoglobin A and one parent must have a gene with a different hemoglobin type for a baby to have a hemoglobin trait.
Different hemoglobin types can be S, C, or D, among others. There are other hemoglobin traits such as beta thalassemia trait and other less common traits.
Anyone can have a hemoglobin trait. Hemoglobin traits are more often found in people whose families came from Africa, Mexico, Central America, India, the Middle East and parts of Europe and Asia.
If a baby does not have a disease, why should parents be tested?
Parent testing is offered because many
parents do not know they have a
hemoglobin trait. Blood tests can tell
parents about their hemoglobin type.
A parent knowing about their own hemoglobin trait is important
information for them and their doctor.
What is sickle cell disease?
Both parents must have a hemoglobin trait for a baby to get sickle cell disease.
Hemoglobin disorders affect the body’s ability to have healthy red blood cells. Hemoglobin stores oxygen in the red blood cells. Red blood cells bring oxygen from the lungs to every part of the body.
A person with a hemoglobin disorder has red blood cells that are sometimes stiff and “sickle” shaped. These unusually shaped cells do not deliver oxygen as effectively as usual and can cause health problems. People with sickle cell disease usually require follow up and long-term medical management.
Are there treatments for sickle cell disease?
Yes. There are treatments that help people manage and live well with the disease. With proper information and treatments, people with sickle cell disease can enjoy happy, productive lives. Medical providers should discuss treatment options .
Sickle cell disease is a life-long condition. A baby with sickle cell disease will need regular medical care. The baby should be followed by a regular medical provider, as well as a medical team at a sickle cell disease center.
For more information
- Call the Newborn Screening Hemoglobin Trait Follow-up Program toll free: 1 (866) 954-2229
- Parents can talk to the medical provider of a baby with hemoglobin trait
- Individuals with hemoglobin trait can talk to their own medical provider
- Individuals with hemoglobin trait can tell their medical provider they want to speak with a genetic counselor if they plan to have children