When a pregnancy is affected by hemolytic disease of the fetus and newborn (HDFN), it affect not only the pregnant mother and her baby, but also her family and support network.
Emotional anxiety and stress, as well as a feeling of powerlessness, are common during this challenging time. While negative outcomes for babies with HDFN are now less common due to medical advances in early diagnosis and medical intervention, sometimes families require additional support during pregnancy and delivery. HDFN support groups and resources provide valuable advice and care for HDFN-affected families.
What is HDFN?
Hemolytic disease of the fetus and newborn (HDFN) is an immune-mediated red blood cell (RBC) disorder that occurs when a baby’s RBCs break down quickly, which is called hemolysis. HDFN is caused by a mismatch between a mother’s and her baby’s blood type (A, B, AB, or O) or Rhesus (Rh) factor (Rh-positive or Rh-negative) during pregnancy. Numerous antibodies to RBC antigens can be linked to HDFN, such as those from the ABO and Rh blood group systems.
The risk of developing HDFN is usually identified during prenatal blood type screening, which activates a more comprehensive approach to prenatal care. If a fetus is at risk of developing HDFN, the pregnant mother is referred to a maternal-fetal specialist and a multidisciplinary team of health professionals who will closely monitor mother and baby during pregnancy and birth. While it is reassuring to have extensive medical care, the pregnant woman may feel the need for extra support from women who have been through the same challenges, who can share their experience.
Online forums, Facebook pages, directories, blogs and other groups create a community around those with the shared experience of an HDFN pregnancy.
Learn more about HDFN FAQs
What resources are available?
There are a number of online forums and support groups available to support parents and families impacted by high-risk pregnancies, and more specifically HDFN-affected pregnancies. In particular, the following three foundations offer extensive resources in patient support, advocacy and education.
The Allo Hope Foundation
The mission of the Allo Hope Foundation is to offer resources and support geared specifically towards alloimmunized women and HDFN patients. Its website offers a comprehensive database of information, practical advice and compassion. The foundation also actively promotes disease advocacy and awareness, in addition to conducting patient-centric research initiatives to improve outcomes in HDFN-affected pregnancies.
The Maternal Alloimmunization Foundation
The Maternal Alloimmunization Foundation offers resources for pregnancy, post birth and in the case of the loss of a child due to HDFN. Medical explanations are broken down into more accessible language, to facilitate understanding and illustrations, scan images and photos give a real perspective of navigating an HDFN-affected pregnancy. Patient stories feature on the website, offering first-hand accounts of the challenges of an HDFN pregnancy and birth.
The Fetal Health Foundation
The Fetal Health Foundation is a parent-founded non-profit that offers a message of hope and support to families coping with fetal syndrome diagnosis, treatment and even grief, including HDFN. A clear, detailed explanation of HDFN is provided, as well as an extensive list of treatment centers across the United States. The website blog shares the personal experiences of families with the shared experience of fetal syndromes.
