A pregnant person presents to labor and delivery at 23 weeks’ gestation with concern for preterm labor and a neonatology consult is requested. The neonatologist uses the Extremely Preterm Birth Outcomes Tool provided by the National Institute of Child Health and Development (NICHD), to estimate the child’s chance of survival, based on gestational age (GA), birth weight, infant sex, singleton birth, and antenatal steroids.1 The neonatologist counsels the expectant parents that infants like theirs face an average survival rate of 30 % to 58 %. Among those that survive to 18 – 26 months’ corrected age, 37 – 52 % experience moderate-severe neurodevelopmental impairment, while 35 – 46 % have cognitive developmental delay and 9 – 15 % have moderate-severe cerebral palsy. The parents flounder. What does it mean for their child to have moderate-severe neurodevelopmental impairment, cognitive developmental delay, or moderate-severe cerebral palsy? Should these conditions factor into their decision-making process surrounding resuscitation?

How this information is conveyed to a family makes a difference. A healthcare clinician who perceives the child’s condition as negative will counsel differently than one who understands disability as a social phenomenon, part of the human condition.2 Just as ableism refers to the tendency to undervalue the lives of individuals with disabilities, medical ableism acknowledges the role of the medical profession as propagating the “assumption that the ‘normal’ able body is better than abnormal bodily forms”.3 Ableism, which is prominent in healthcare, leads to inequitable treatment in all facets of care and has been shown to impact, usually unknowing, how healthcare professionals (HCPs) approach conversations surrounding decision-making in cases of extreme prematurity.4 An anti-ableist approach begins with the acknowledgement of the implicit biases that permeate clinical practice.

Conversations surrounding decision-making at extreme prematurity are extraordinarily difficult in which a true shared decision-making process between parents and HCPs is critical. Yet, the presence of ableism in these conversations impacts how we approach, treat, and communicate with patients, ultimately impacting decisions regarding resuscitation and future care.