For any parent, the experience of having a child in the Neonatal Intensive Care Unit (NICU) can be overwhelming and stressful. Newborns affected by hemolytic disease of the fetus and newborn (HDFN) are admitted to the NICU post-delivery to treat proactively symptoms and prevent long-term consequences. NICUs have support available to help parents and families cope, including accommodation and counseling.
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.
Staying as close as possible to your baby during this challenging time will be important for you as you bond with your newborn, but also so you can stay apprised of the often rapidly evolving situation. Some NICUs provide parents with accommodation, allowing families to be present 24/7 and facilitating the all-important skin-to-skin contact.
Infant-parent rooms have been shown to generate benefits for the baby’s recovery and long-term outcomes and may even shorten the time spent in the hospital. Unfortunately, not all NICUs have the capacity to provide rooms for parents, but they will have a database of free or low-cost accommodation close by for NICU parents.
Learn more about HDFN treatment and care
Hospital resources
In addition to accommodation, each NICU offers resources to support parents and guardians while their child is in the NICU. Social workers help guide parents through the daily challenges. There is a lot of uncertainty that comes with a rare disease, which can lead to anxiety and emotional distress.
For families with older children, it can be difficult to speak openly about the situation. Child life specialists help NICU families cope with the emotional and physical toll of having a newborn in the NICU. Through therapeutic play, they help facilitate the conversation with children of all ages on why their baby sister or brother cannot come home yet.
HDFN support networks
As is often the case for rare diseases, there is strong patient advocacy and a comprehensive support network for people experiencing HDFN in the U.S. and around the world. Support ranges from online communities to associations and foundations that provide a wealth of practical advice, personal patient stories and education.
The following nonprofit HDFN organizations will have the answers to many of your questions or can put you in touch with someone who does:
NICU support networks
As well as hospital resources and HDFN support networks, there are numerous NICU nonprofit organizations to support parents of NICU babies.
Here are a few to get started:
Finally, March of Dimes offers support to women and babies in need. As part of their NICU Family Support program, they educate families and NICU staff, with the aim of improving the patient experience.
