Many people have questions about sickle cell trait after newborn screening. Dr. Lewis Hsu, SCDAA chief medical officer, answers some of the FAQs below.
Can this test be wrong?
The standard process for newborn screening is that a result showing sickle cell trait will be followed up with another blood test – so two tests will be done. A newborn screening result without any trait will not get a follow up blood test. The newborn screening result is usually correct, and the state labs have quality controls built in. However, issues outside of the lab can make the newborn screening process miss sickle cell trait, for example, if the baby was prematurely born, if the baby got a blood transfusion before the test, if there were problems handling the sample, or if there were errors in entering follow-up contact information.
How do I ask for a confirmation test?
If you would like to be certain about whether your older children have sickle cell trait or not, ask their doctor to order a blood test called “hemoglobin fractionation” or “hemoglobin electrophoresis.” Based on your knowledge that someone in the family has sickle cell trait, this test should be covered by your child’s medical insurance. If you run into barriers for that testing, some local sickle cell organizations (members of SCDAA) offer sickle cell testing free of charge.
Please give me quick information about sickle cell trait.
See this SCDAA brochure with the highlights of information about sickle cell trait – this is exactly what I give my patients, except that it is customized with local resource contact information. The main health concern for sickle cell trait is that the sickle gene can be passed along to the next generation.
Where can I go deeper on what sickle cell trait means for health? I want to know about everything.
The best source for more detailed and up-to-date information about sickle cell trait is this Sickle Cell Trait Toolkit. It was jointly created by the Centers for Disease Control and Prevention, the American Society of Hematology and SCDAA.