What’s in a name? The ethical implications and opportunities in diagnosing an infant with neonatal abstinence syndrome (NAS)

Neonatal abstinence syndrome (NAS) is a condition mired in stigma. Diagnostic efforts focus upon the needs of the mother and the clinicians and may sideline and neglect the infant. This results in ‘reflected stigma’ where patients do not receive needed care because we, as clinicians, are too afraid to acknowledge their condition. There is no doubt that NAS, as a diagnosis, is a work in progress but in the meantime, NAS should be used as an opportunity to identify children with a history of prenatal substance exposure so they can receive much-needed early intervention and support, just as any other child in need. An accurate diagnosis is essential for effective treatment. Without a diagnosis, clinical decision-making is unguided, resource allocation is uninformed and inefficient and research priorities are unclear, making innovation an insurmountable task [1]. In many mental health illnesses, including substance use disorders, achieving an accurate diagnosis is challenging as many of these conditions may not manifest immediately as physical illnesses. This difficulty makes long-term sequelae difficult to appreciate, especially if the condition is confounded by a panoply of social, economic and other problems. Practitioners may become frustrated and even deny the importance of the original illness in contributing to poor outcomes. A lack of acknowledgement may paradoxically fuel stigma, prevent appropriate treatment [2] and perpetuate a public view that the problem is either non-existent or non-medical, which implicitly fosters ‘othering’ of those with the condition [3]. The term neonatal abstinence syndrome (NAS) was first proposed by Loretta Finnegan and colleagues in 1975 [4]. NAS describes the constellation of withdrawal symptoms experienced by infants of mothers using addictive substances. For more than 50 years, NAS has remained a ‘syndrome’, a collection of problems without a clearly definable cause and treatment. Enormous clinical, research and political efforts have been spent to optimize withdrawal treatment because inappropriately treated NAS has devastating consequences, with the potential to be rapidly fatal or cause serious complications such as seizures [5]. Today, improved vigilance and treatment has made NAS a rare direct cause of childhood death. Most infants with NAS will survive to be discharged alive from hospital after birth [6]. During the last 20 years, evolving knowledge shows that withdrawal is only the tip of the iceberg, and some problems may take months or even years to manifest. An Australian data linkage study showed that when compared to other children, 3842 children with a history of NAS were three times more likely to die, usually from preventable causes [6], twice as likely to be hospitalized [7], twice as likely to fail in standardized curriculum-based tests [8], 15 times more likely to have a major disability [7] and 40 times more likely to be assaulted, maltreated and injured [6, 7]. A cohort study showed that by age 5 years, one in two American children with a history of NAS had been diagnosed with a mental health disorder [9], the most important predictor of future adult mental health and early death [10]. NAS is now a global public health problem. Due to the world-wide opioid crisis, the number of infants diagnosed with NAS has increased more than 10-fold over the last decade [11] which has, not unexpectedly, led to steep increases in postnatal hospital costs and bed occupancy [12]. This crisis has consumed clinician and policymaker energy for more than 20 years, because NAS-related hospitalization is largely funded by the public system [12]. Consequently, NAS care is focused upon short-term goals: to optimize withdrawal treatment to reduce hospital costs and length of stay. Attention needs to focus upon events after withdrawal. Recognizing that prenatal substance use has consequences beyond the neonatal period provides an enormous opportunity to support not only the infants, but their families and communities. This strategy has benefited children with other chronic life problems that may not be evident immediately at birth, e.g. prematurity [13], autism [14] and fetal alcohol spectrum disorders (FASD [15]), where early screening, identification and support from well-defined pathways of care have produced enormous tangible improvements in life trajectories. This strategy is also beneficial in children impacted by complex psychosocial problems, such as poverty or parents with low cognitive ability and poor mental health [16]. Unfortunately, the societal neglect of children and adults with a history of NAS seems rooted in normative moral values and confusion regarding what exactly constitutes a diagnosis of NAS [17], as well as concerns about the legal, social and ethical ramifications of how a diagnosis of NAS will impact upon the mother [18]. This deflects attention from the consequences of the primary problem, prenatal drug exposure, as well as from the child, resulting in ‘reflected stigma’ where a condition associated with societal disapproval or disgrace compromises care for the patient [19]. As paediatricians and child health advocates, we need to speak out about the detrimental effects that such neglect, no matter how well-meaning, have on the child and his/her chances to overcome early life adverse exposures. Even though the exact diagnostic criteria for NAS continue to be unclear and debated, we must now advocate to use NAS as a marker to identify children in need of support for an enduring disorder. We need to use the momentum generated around NAS to institigate efforts for more effective research on treatment and long-term outcomes and to direct scarce public funding to address the life-long sequelae. We need to use NAS to overcome reflected stigma, especially ‘baked in’ structural stigma, that prevents people with a history of NAS getting the help they need. In conclusion, NAS is unlikely to be simply an acute problem arising from prenatal substance exposure. Its exact diagnosis may be a work in progress, but identifying a child with a history of NAS will pave the way to acquire critical information on longitudinal service needs and outcomes. This will, in turn, provide critical direction of much needed mental, physical and educational services to optimize the child’s outcomes. Clinicians and policymakers have an ethical obligation to accurately diagnose NAS, but we must also provide effective interventions that support the ‘big picture’, including future wellbeing. Improving our understanding and pathways of care for children and families impacted by NAS will reduce practitioner neglect by giving health-care providers a rationale for care. While we await an accurate diagnosis of NAS, consideration should perhaps be made to support any child exposed to a prenatal addictive substance, regardless of withdrawal. This approach will allow us to overcome the marginalization, stigmatization and neglect which has been common and implicitly perpetuated during the last 50 years. None. None. Ju Lee Oei was responsible for the conceptualization and first draft and approved final draft for publication. Stacy Blythe reviewed manuscript and approved final draft for publication. Lauren Dicair was responsible for the conceptualization and approved final draft for publication. David Didden reviewed manuscript and approved final draft for publication. Anne Preisz revised, reviewed and approved final draft for publication. John Lantos revised and approved final draft for publication and supervised publication.