Sickle Cell Newborn Screening -Frequently Asked Questions (FAQs)  JoAnn Beasley, RN, BS  State of Georgia Sickle Cell Newborn Coordinator, Clinical Manager of Georgia Comprehensive Newborn Screening Program

What is sickle cell newborn screening?

• I explain to my parents that sickle cell newborn screening is a blood test that is collected at birth and shows if your baby has sickle cell trait, sickle cell disease or any of the other abnormal hemoglobins.

• All babies are screened or tested universally in many states.

• A small blood sample is taken from your babies finger or heel, usually before they leave the hospital.
• The blood sample will show whether your baby has sickle cell trait, sickle cell disease or any other hemoglobin.
• You may need to call your doctor results of the testing.

• Sickle cell disease is caused by abnormal red blood cells that affect the hemoglobin. Normal red blood cells are round. Sickle red blood calls are shaped like a banana.

• 1 in 12 black Americans in the United States carry the sickle cell trait, about 1 in 375 will have the disease.

• Your baby inherited sickle cell disease. Children inherit genes from both parents.

• When both parents have sickle cell trait the chances for your baby to inherit sickle cell disease are 1 in 4 with each pregnancy.

• You should seek sickle cell counseling to learn to care for your baby and find social service and psychosocial support for your family.

• A pediatric hematologist is recommended because they specialize in blood disease. Some babies are cared for by your family doctor or pediatrician (children;s doctor)

• Sickle cell disease can cause serious health problems. The most serious problems are:

Infection - your baby is at higher risk to get serious infections. Fevers should be reported right away to your doctor or emergency facility.

Anemia - fewer than normal red blood cells. With fewer red blood cells tissues and organs do not get the oxygen they need.

Harm to body organs - because these abnormal red blood cells flow throughout the body many organs of the body can be damaged over time.

Painful episodes - these painful episodes are also called a pain crisis. Pain and swelling occurs most often in the hands and feet with babies. This episode is called dactylitis or hand and foot syndrome.

• You can help your baby by learning as much as you can about the disease.

• Your baby will need regular doctor appointments. By 2-3 months of age penicillin will need to be given 2 times a day by mouth. This medication will help prevent life-threatening infections. Check with your doctor, nurse, or pharmacist for proper storage.

• Make sure your baby receives all immunizations to protect against childhood diseases.

• Make sure your baby eats a proper diet and drinks plenty of fluids

• Keep your baby dressed properly for the weather conditions.

• Proper treatment, medications and early medical care can reduce serious complications and death.

• What does my baby have and how my baby got it?
• What do I have? What does my mate have?

(especially if you want additional children)

• Explain the problems my baby may have. What should I do when these problems happen?
• How long will my baby take Penicillin?
• What should my eat? Will my baby need special vitamins? Will iron supplements help?
• How can I join support groups?
• What medical services are available?
• What can I do to insure a healthy outcome as my baby gets older?
• How will this disease affect my family?
• Will my baby need special shots or immunizations?

Ask a question - contact the Sickle Cell Center staff at aplatt@emory.edu

Send mail to aplatt@emory.edu with questions or comments about this web site.
Copyright © 1997 Sickle Cell Information Center
Last modified: May 05, 2001