Experiencing a pregnancy affected by hemolytic disease of the fetus and newborn (HDFN) is challenging, and at as it’s a rare disease, it’s important for parents and caregivers to be vigilant in overseeing their baby’s care.
While early diagnosis and treatment have dramatically reduced the most serious outcomes, HDFN can still have a significant effect. Navigating HDFN and pursuing the best outcomes for you and your baby will require a proactive, informed approach to treatment and care.
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 (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.) factor (Rh-positiveRh-Positive A blood type trait that means your red blood cells have the Rh(D) antigen. or Rh-negativeRh-Negative A blood type trait that means your red blood cells lack the Rh(D) antigen.) during pregnancy. Numerous 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 RBC antigensAntibody 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. can be linked to HDFN, such as those from the ABO and Rh 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. systems.
Advocating for yourself and your HDFN-affected infant
Following diagnosis, the first important step is to become as informed as possible on HDFN and its management, treatment options and the potential risks and outcomes for your baby. It may take some time to get your head around all aspects of the disorder, but by there are myriad resources available to become educated on the subject.
You can find patient-oriented information on HDFN online that includes tips on how to best advocate for HDFN-affected families. Support groups such as the Allo Hope Foundation and others aim to empower, educate and support mothers and families living with HDFN during pregnancy and post-delivery.
Through seeking out and processing the maximum of information, you will become more comfortable around HDFN topics. This will help you feel more equipped to play an active role in the HDFN-associated medical treatment and care of you and your baby.
Read more about helpful links for HDFN
Be prepared for medical appointments
Each time you have an appointment or any interaction with your healthcare team, come prepared. HDFN affects your baby, but you have the responsibility of protecting your baby and advocating for their health and well-being.
Make the most of the opportunity to ask any questions you may have for an update on the progress of your pregnancy and your baby’s health. Don’t be afraid to request extra tests or ask for a second opinion.
You can ask your maternal-fetal healthcare team for information regarding:
The next steps in the management and treatment of your baby’s HDFN
- An overview of current treatment
- Potential risks for your baby
- Worst case outcomes
- What to expect for the remainder of your pregnancy
- What to expect during labor and delivery
As stressful as it may seem at times, advocating for you and your baby is a positive approach to managing the HDFN experience. Don’t shy away from discussing the difficult aspects of your HDFN journey with your doctors and medical team. Support groups and accounts of first-hand experiences can also be a valuable resource of information and advice.
