Neonatal Outcomes in the Era of Periviability The Journey of Ontario s Tiniest Babies

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Melvin Wright
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1 Neonatal Outcomes in the Era of Periviability The Journey of Ontario s Tiniest Babies Paige Terrien, MD Director, Neonatal Follow Up Program University of Toronto

2 Disclosure I do not have an affiliation (financial or otherwise) with a pharmaceutical, medical device or communications organization. I do not intend to make therapeutic recommendations for medications that have not received regulatory approval (i.e. off-label use of medication). 2

3 Objectives At the end of this session, you will be able to: 1. Review behavioral phenotype of prematurity 2. Review etiology of phenotype 3. Discuss new CPS guidelines with resuscitation of periviable birth 4. Review benefit of databases to track preterm birth 3 May 15, 2017

4 Introduction Hope is not futile, and hope does not mean you don t understand. It means that a good outcome is possible. 4 May 15, 2017

5 Background 5 May 15, 2017

6 Age of viability decreasing Background 22 x/7 weeks versus 23 weeks versus 24 weeks (Rysavy MA, Lei L, Bell EF et al. Between-Hospital Variation in Treatment and Outcomes in Extremely Preterm Infants. NEJM 2015;327: ) 6 May 15, 2017

7 Gray Zone AAP-- Borderline viability: weeks Cummings J, Comm Fetus & NB. Antenatal Counseling Regarding Resuscitation and Intensive Care Before 25 Weeks of Gestation. Pediatrics 2015;136: ACOG-- Periviable: 20 0/7 to 25 6/7 weeks Raju TNK, Mercer BM, Burchfield DJ, Joseph GF. Periviable birth: executive summary of a joint workshop by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, Society for Maternal-Fetal Medicine, American Academy of Pediatrics, and American College of Obstetrics and Gynecologists. ACOG 2014; CPS-- Extremely preterm birth: 22 0/7-25 6/7 weeks Lemyre B, Moore G, CPS Fetus & NB Comm. Paediatr Child Health May 15, 2017

8 Neonatal Outcomes Outcomes of prematurity fairly stable 6-25% Impairment traditionally defined by the presence of Cerebral palsy Vision impairment Hearing impairment Cognitive impairment 8 May 15, 2017

9 Neonatal Outcomes 50-70% with challenges in school Challenges with: Language comprehension and expression (Verbal and nonverbal communication) Learning Spatial relationships Impulse control, busy behaviour Organizational abilities Autism Spectrum Disorder (ASD) Social immaturity Emotional lability Anxiety (separation anxiety) Motor coordination PT, Luther M, Asztalos E. The perfect storm: minor morbidities in the preterm survivor. Curr Pediatr Rev,2012; 8: May 15, 2017

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11 Neonatal Outcomes-Social Johnson S, Hollis C, Kochhar P, Hennessey E, Wolke D, Marlow N. Autism Spectrum Disorders in Extremely Preterm Children. J Pediatrics 2010; 156:

12 Behavioral Phenotype Describes a constellation of behavioral, cognitive, motor, and social difficulties observed in a population with a common biological disorder Premature survivors have a phenotype Common biological disorder=alterations in brain development Hodapp RM, Fidler DJ. Special Education and Genetics: Connections for the 21 st Century. The J Spec Educ 1999; 33: Back SA, Miller SP. Brain Injury in Premature Neonates: A Primary Cerebral Dysmaturation Disorder? Ann Neurol 2014:75; PT, Luther M, Asztalos E. The perfect storm: minor morbidities in the preterm survivor. Curr Pediatr Rev,2012; 8: May 15, 2017

13 Behavioral Phenotype of Prematurity 13 May 15, 2017

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Etiology Behavioral Phenotype of Prematurity Dysmaturation: Gray matter architecture distorted White matter connectivity altered Cerebellum under-developed Sensory system disorganization Secondary

Brain injury in preterm infants: a complex amalgam of destructive and developmental disturbances. J Lancet 2009; 8: 110-124. Alyward GP. Neurodevelopmental Outcomes of Infants Born Prematurely.

16 Etiology Behavioral Phenotype of Prematurity Dysmaturation: Gray matter architecture distorted White matter connectivity altered Cerebellum under-developed Sensory system disorganization Secondary cortical dysplasia Back SA, Miller SPM. Brain Injury in Premature Neonates: A Primary Cerebral Dysmaturation Disorder? Ann Neurol 2014;75: Volpe JJ. Brain injury in preterm infants: a complex amalgam of destructive and developmental disturbances. J Lancet 2009; 8: Alyward GP. Neurodevelopmental Outcomes of Infants Born Prematurely. J Dev Behav Pediatr 2005; 26: Inder TE, Wells SJ, Mogridge NB, Spencer C, Volpe JJ. Defining the Nature of the Cerebral Abnormalities in the Premature Infant: A Qualitative Magnetic Resonance Imaging Study. J Pediatr 2003; 143: Lickliter R. The Integrated Development of Sensory Development. Clin Perinatol 2011;38: May 15, 2017

17 Etiology Behavioral Phenotype of Prematurity Heightened parental stress potentiates: Disrupted attachment Diminished parental capacity Depression Goodness of Fit Vulnerable child syndrome Treyvaud K, Anderson VA, Howard K, Bear M, Hunt RW, Doyle LW, et al. Parenting behavior is associated with the early neurobehavioral development of very preterm children. Pediatrics 2009; 123: Treyvaud K, Anderson VA, Lee KJ, Woodward LJ, Newnham C, Inder TE, et al. Parental mental health and early social-emotional development of children born very preterm. J Pediatr Psychol 2010; 35: May 15, 2017

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22 Klein JM. Beyond Prematurity: Management of the week Gestation Premature Infant, The Iowa Way. 22 May 15, 2017

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We understand that clinicians need to examine outcomes and classify children: they can have serious, moderate, or mild disability or may be classified as typical.

25 We understand that clinicians need to examine outcomes and classify children: they can have serious, moderate, or mild disability or may be classified as typical. These categories were created by physicians. If we were asked to classify our children as disabled or not disabled, then doctors would have different categories. Why is hyperactivity a mild disability and cerebral palsy a major one? 25 May 15, 2017

26 Opportunities for Data Continue to simplify outcomes Lack of emphasis on function, living well Databases existing in addition to BORN in North America: Canadian Neonatal Network (CNN) Canadian Neonatal Follow Up Network (CNFUN) Vermont Oxford Network (VON) National Institutes of Child Health and Human Development (NICHD) Autism Treatment Network (ATN) Kids Brain Health Network (Neuro DevNet) Province of Ontario Neurodevelopmental Disorders (POND) 26 May 15, 2017

27 Small Baby Care Bundle Obstetrical care Standardized delivery bundle of care Standardized nursing practice Aim: to improve life outcomes for children with brain based developmental disabilities and their families 27 May 15, 2017

28 Behavioral Phenotype of Prematurity associated with increased difficulty functionally Conclusion Periviable birth = informed choice Data key to understanding and changing outcomes 28

29 Acknowledgements Rudaina Banihani, MD, Neo-Dev Paeds Maureen Luther, PT Patricia Maddalena, NP Rosanna Manarin, RN Lesley Barreira, Beh Ther Currently hiring, OT/PT Michael Luther, PhD, Psyc Connie Taras-Gold, SLP Marion Deland, manager Carol Grenade, admin Ruth Kim, admin 29 May 15, 2017

30 Questions? 30 May 15, 2017

Prematurity as a Risk Factor for ASD. Disclaimer

Prematurity as a Risk Factor for ASD Angela M. Montgomery, MD, MSEd Assistant Professor of Pediatrics (Neonatology) Director, Yale NICU GRAD Program Suzanne L. Macari, PhD Research Scientist, Child Study