Navigating Breastfeeding with Stacked Rare Diseases: A Case for Clinical Skill, Advocacy, and Interprofessional Collaboration - Workshop 6

Speaker(s): Jimi Francis

This case report describes the clinical management and advocacy required to support a breastfeeding mother facing multiple rare and complex medical diagnoses. The patient—a 32-year-old first-time mother—presented with hypermobile Ehlers-Danlos Syndrome (hEDS), autoimmune autonomic neuropathy, a right atrial thrombus caused by port placement, and a rapidly growing phyllodes breast tumor diagnosed during pregnancy. She experienced both immediate and delayed postpartum hemorrhage, which required blood transfusions. Despite these significant challenges, the family’s commitment to breastfeeding remained firm. At delivery, skin-to-skin contact was initiated immediately, and the IBCLC was present during the birth. Early assessment identified Class I ankyloglossia, which was corrected by an ENT specialist on day 3. Infant feeding was supported with donor milk delivered via syringe and finger feeding, along with orofacial exercises and temporary use of a nipple shield. A partial mastectomy was performed urgently, and milk production was maintained through careful lactation management. Over time, the infant transitioned to effective unilateral breastfeeding. This case underscores the vital role of skilled lactation care in managing rare and complex overlapping conditions. Clinical lactation strategies, clear communication, and interprofessional collaboration—especially between the IBCLC and the family’s osteopathic physician—were essential in preserving milk supply, respecting parental goals, and ensuring long-term breastfeeding success. The mother continued breastfeeding her infant until he was 18 months old. This case illustrates how personalized care, rooted in clinical excellence and advocacy, can help medically complex families overcome significant barriers to achieve their breastfeeding objectives.