Parents of children with hemolytic disease of the fetus and newborn (HDFN) report significant challenges after leaving the hospital, according to an abstract recently presented at the 2025 National Organization for Rare Disorders Breakthrough Summit.
“Many affected infants are discharged with no clear outpatient plan, placing the burden of coordination on families,” the authors wrote.
HDFN management during the prenatal period and immediately following birth has improved greatly in recent decades. However, without standard follow-up protocols, many families are left uncertain of their next steps. In some cases, infants may develop severe complications such as delayed anemia, which can be fatal if left untreated.
The authors collected survey responses from the Maternal Alloimmunization Foundation to better understand the gaps in HDFN care following hospital discharge. They also surveyed healthcare providers to understand what guidance they typically provide their patients.
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The majority of respondents received minimal or no written plans when their baby was discharged from the hospital. Moreover, some providers appeared unaware that delayed complications can occur in patients with HDFN.
Families often felt the need to self-advocate for the proper follow-up care, whether that be blood testing or referrals to other physicians. In the absence of advice from their healthcare providers, many turned to other resources and support groups for help.
Throughout this process, participants experienced emotional distress due to the lack of support from their healthcare teams. Mothers reported not only severe guilt but also feelings of betrayal by the medical system when their child developed complications following discharge. In many cases, this was due to a lack of adequate follow-up.
Based on these findings, the authors advocate for the development of a standardized set of guidelines for post-discharge care. Infants should undergo hemoglobin testing every four to six weeks, they wrote, and receive referrals to doctors with sufficient experience in HDFN. Additionally, care summaries and clear follow-up plans would improve patient outcomes and parental well-being.
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