By 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.
Who gets tested in most states?
- All babies are screened or tested universally in many states.
How is the testing done?
- 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.
What is sickle disease?
- 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.
Who gets sickle cell trait and disease?
- 1 in 12 black Americans in the United States carry the sickle cell trait, about 1 in 375 will have the disease.
How did my baby get sickle cell 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.
What if my baby has sickle cell disease?
- 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)
What will happen to my baby?
- 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.
Will my baby die?
- Proper treatment, medications and early medical care can reduce serious complications and death.
What should I ask my doctor?
- 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