Newborn Screening Information for Families:
Hemoglobin and Sickle Cell Trait
What is Trait?
Trait is when a person has some normal hemoglobin and some abnormal hemoglobin. Hemoglobin is part of the red blood cells and its job is to carry oxygen throughout the body. One type of testing done in newborn screening is to look for a group of disorders called hemoglobinopathies. Hemoglobinopathies are inherited disorders that affect the structure of the hemoglobin. You may be familiar with the most common hemoglobinopathy, sickle cell disease. However, unlike sickle cell disease, an individual with trait is expected to be healthy and could live their whole life without knowing they have trait. While sickle cell trait is the most common trait, there are many other traits as well (such as C trait, E trait, or D trait). When any trait is inherited along with normal hemoglobin, it is expected that a person would be healthy.
Hemoglobin Trait Communication
If a baby is found to have a trait through newborn screening, the mother of the baby will receive a packet of information in the mail about the specific trait the baby was found to have.
We will directly contact the baby's doctor or clinic listed on the newborn screening card to confirm they have seen the baby and send them the results of the newborn screen. This is one of the reasons it is important for hospitals and birth providers to get the name of a baby's doctor or clinic so that the baby newborn screening results can be promptly sent to them.
Parents of babies with a trait should:
- Have a discussion with their baby's doctor about the result, their next steps, and the importance of the result for themselves, their child, and their family.
- Make sure to have their baby retested for the trait at six months of age to confirm the result.
- Keep a record of the test results and the packet of information from the newborn screening program for future reference.
Why It Is Important To Know If You Have A Hemoglobin Trait
Hemoglobin trait is inherited from your parents, like hair or eye color. If one parent has a hemoglobin trait, there is a 50% (1 in 2) chance with each pregnancy of having a child with a hemoglobin trait.
If both parents have a hemoglobin trait, there is a 25% (1 in 4) chance with each pregnancy of having a child with a serious hemoglobin disease, like sickle cell disease.
Below is one example of how two parents with trait can have a child with disease:
With each pregnancy, this couple has a 25% (1 in 4) chance of having a child with sickle cell disease, a 50% (2 in 4) chance of having a child with sickle cell trait, and a 25% (1 in 4) chance of having a child with no trait or disease.
Frequently Asked Questions
A person with a hemoglobin disease has inherited two genes that affect their red blood cells. People with a hemoglobin disease require special health care for their entire lifetime to manage their disease.
Center for Disease Control: Hemoglobinopathies Monitoring
Region 4 Midwest Genetics Collaboritive: Hemoglobinopathies
Baby's First Test: Hemoglobinopathies
American Society of Hematology: Sickle-Cell/
American Society of Hematology: State of Sickle Cell Disease 2016 Report (PDF)
Questions? Call our hemoglobin trait educator at 651-201-5515 or through email at firstname.lastname@example.org