If you are pregnant and at risk of carrying a baby affected by hemolytic disease of the fetus and newborn (HDFN), you will need extra medical and emotional support.
Even when caught early, the diagnosis is enough to create stress and anxiety for you and your baby during pregnancy and even post-delivery.
HDFN is a rare red blood cell disease that occurs as a result of a mismatch in the blood type or group of the mother and baby. It can be due to RhRh factor A protein or antigen found on red blood cells. When an Rh-negative mother carries an Rh-positive fetus, her immune system may make antibodies that attack the fetus' red blood cells. or ABO blood groupBlood group A classification of blood based on inherited markers found on red blood cells. The ABO and Rh blood groups are most common in HDFN. differences and may lead to severe health conditions in your baby, such as anemiaAnemia A condition that occurs when the body doesn’t have enough healthy red blood cells to carry oxygen to its tissues. In HDFN, anemia occurs when maternal antibodies destroy fetal red blood cells. and jaundiceJaundice A common symptom of HDFN, jaundice is caused by excess bilirubin and is characterized by a yellow tint to the skin or eyes..
In the United States, there are several associations and support groups that provide advice and information for families dealing with HDFN, as well as specialized medical care.
Prenatal support
If HDFN is detected, early treatment can help prevent serious outcomes. The most important step to treatment is to ensure you have good prenatal care. Surround yourself with trusted health professionals, including your primary health provider and your obstetrician.
You will benefit from prenatal screening for Rh D, and if positive, the injection of Rh immunoglobin to prevent your blood from developing antibodiesAntibody A protein made by the immune system that recognizes and attacks foreign substances, such as bacteria, or in HDFN, fetal red blood cells carrying incompatible antigens. to your baby’s blood. Doctors will also closely monitor your baby’s development during pregnancy. Treatment options in utero include intrauterine blood transfusion and IVIGIntravenous immunoglobulin A therapy made from donated antibodies that may help reduce the mother’s immune response and protect the fetus. therapy, as well as possible early delivery.
The Allo Hope Foundation is a nonprofit organization dedicated to empowering, supporting and informing families who experience HDFN. There is a wide range of tools and information starting from diagnosis through to delivery, and even loss.
The Maternal Alloimmunization Foundation is a patient-run not-for-profit organization that serves women and families affected by HDFN. Support is offered in many forms, including both educational and emotional support and creating awareness in the wider community. The aim of these groups is to prevent stillbirth as well as newborn mortality and morbidity caused by HDFN.
Postnatal support
Postnatal management of HDFN will initially take place at the hospital, following delivery. Based on the health of your baby, several care pathways may be implemented. To treat severe anemia and jaundice, options will include phototherapyPhototherapy A treatment that uses special blue light to help newborns break down bilirubin and prevent kernicterus. as a first-line treatment for jaundice, and IVIG therapy, blood transfusions and exchange transfusions in more severe cases.
Following discharge, you may need to continue phototherapy with your baby at home. This is performed with the help of a portable phototherapy device known as a Biliblanket.
Additional support is also available via websites such as the American Academy of Pediatrics (AAP), which is a reliable source of medical and clinical information. Here you will find the information for parents and healthcare professionals including the latest guidelines, publications and resources to improve your knowledge and understanding of HDFN.
Other support is available for mothers and families and may differ depending on where you’re based in the United States. Check with your healthcare team for any additional support local to your area or state.
