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 Rh or ABO blood group differences and may lead to severe health conditions in your baby, such as anemia and jaundice.
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 antibodies 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 IVIG 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 phototherapy 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.
