Most pregnancies go as planned. But for some families, a rare health issue can change everything. On Rare Disease Day, we are raising awareness about two rare conditions that can lead to serious complications: HDFN (hemolytic disease of the fetus and newborn) and FNAIT (fetal and neonatal alloimmune thrombocytopenia).
Understanding HDFN and FNAIT
Usually, a mother’s immune system protects her and her baby. But in rare cases, it can make a mistake and produce proteins called alloantibodies. These alloantibodies can cross the placenta and attack the baby’s blood cells.
- HDFN happens when the mother’s antibodies attack the baby’s red blood cells. This can lead to anemia (not enough healthy red blood cells), jaundice, and other serious complications before or after birth.
- FNAIT happens when antibodies attack the baby’s platelets. These are cells that help blood clot. Low platelets can increase the risk of bleeding in the brain and other organs.
Pregnancies at risk for HDFN are usually identified through blood tests, but not all risks are caught in time. There is currently no screening to identify pregnancies at risk for FNAIT, so many parents hear about FNAIT for the first time after their baby is born and is showing symptoms of low platelets.
How do HDFN and FNAIT affect families?
Families who have faced HDFN or FNAIT often describe feeling scared, confused, and unsure where to turn. Some say they had to push for testing, search for specialists, or educate themselves. This can be even harder for families who already face barriers to care or live in areas with fewer maternity services.
Right now, there are no approved treatments specifically for HDFN or FNAIT, and many parents feel that current options are limited. That’s why research, better screening, and clear information for both families and health care providers are so important.
Working together so families aren’t alone
With support from partners like Johnson & Johnson, we’re working to shine a light on rare alloimmune diseases of pregnancy and to make sure families are not facing them alone. If you are impacted by HDFN or FNAIT, it’s important you and your provider work together as a team.
Remember:
- Your voice matters. If you have a family history or have had a pregnancy affected by these conditions, speak up. You are the best advocate for your baby.
- Ask for clarity. Since there are currently no approved therapies for HDFN or FNAIT, it is important to have open, honest conversations with your care team about monitoring and management options.
- Seek support. Advocacy groups and peer communities can offer information, connection, and emotional support as you go through your pregnancy and postpartum journey.
For more information visit:
Johnson & Johnson Innovative Medicine: Maternal Fetal Alloimmune diseases of pregnancy