Hereditary Persistence of Fetal Hemoglobin

What is hereditary persistence of fetal hemoglobin? 

Hereditary persistence of fetal hemoglobin (HPFH) happens when your child’s red blood cells contain more hemoglobin F (fetal hemoglobin) than normal.  

The gene for HPFH is passed down from parent to child just like hair color and eye color. Unlike sickle cell disease, HPFH cannot be identified with a blood test at birth. This is because newborn babies normally have a large amount of hemoglobin F. 

Hemoglobin F usually decreases during the first few months of life. It is replaced with hemoglobin A. Children with HPFH continue to make high levels of hemoglobin F throughout their lives. 

HPHF is a rare condition. About 1 in 1,000 African Americans have the gene for the HPFH trait. This means they are a carrier of the condition. About 1 in 12 African Americans have the sickle cell trait.  

Hereditary persistence of fetal hemoglobin and lab tests 

A few newborns inherit a gene for HPFH from one parent and a sickle cell gene from the other. This causes a condition called hemoglobin S/HPFH (HbS/HPFH). It looks like sickle cell anemia on laboratory testing at birth. 

Special tests are usually needed at about 1 year of age to determine if a child has HbS/HPFH instead of other more serious types of sickle cell disease. 

Prognosis for hereditary persistence of fetal hemoglobin 

Having HPFH trait is harmless to the carrier.  If your child has HbS/HPFH, they are unlikely to have any related health problems. They generally do not have the same issues that people with other types of sickle cell disease experience. 

Important things to know about HbS/HPFH 

• It is important for your child to get all the recommended vaccines. Vaccines help fight infection.  
• Extra vaccines given to children with sickle cell disease to protect against pneumococcal infection are not required for children with HbS/HPFH. 
  
• Your child does not need to take daily penicillin unless prescribed by their care team to treat an infection. 
  
• No special fever precautions are required for children with HbS/HPFH. If your child has a fever, you should contact your child’s care team. 
  
• Remember to follow up each year with your child’s hematologist.