Neonatal Outcomes in the Era of

Periviability The Journey of Ontario’s Tiniest Babies

Paige Terrien Church, MD Director, Neonatal Follow Up Program University of Toronto

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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).

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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

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Introduction

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“Hope is not futile, and hope does not

mean you don’t understand. It means that

a good outcome is possible.”

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Background

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Background • Age of viability decreasing

– 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;327:1801-11)

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Gray Zone

• AAP-- Borderline viability: 22-24 weeks • Cummings J, Comm Fetus & NB. Antenatal Counseling Regarding Resuscitation and Intensive Care Before 25 Weeks of Gestation.

Pediatrics 2015;136:588-595.

• 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;406-417.

• CPS-- Extremely preterm birth: 22 0/7-25 6/7 weeks • Lemyre B, Moore G, CPS Fetus & NB Comm. Paediatr Child Health 2017

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Neonatal Outcomes

• Outcomes of prematurity fairly stable 6-25%

• Impairment traditionally defined by the presence of

– Cerebral palsy

– Vision impairment

– Hearing impairment

– Cognitive impairment

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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

• Church PT, Luther M, Asztalos E. The perfect storm: minor morbidities in the preterm survivor. Curr Pediatr

Rev,2012; 8: 142-151.

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Neonatal Outcomes-Social

Church

Johnson S, Hollis C, Kochhar P, Hennessey E, Wolke D, Marlow N. Autism Spectrum Disorders in Extremely Preterm Children. J Pediatrics 2010; 156: 525-531

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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 21st Century. The J Spec Educ 1999;

33: 130-137.

• Back SA, Miller SP. Brain Injury in Premature Neonates: A Primary Cerebral Dysmaturation Disorder? Ann Neurol 2014:75;469-86.

• Church PT, Luther M, Asztalos E. The perfect storm: minor morbidities in the preterm survivor. Curr Pediatr Rev,2012; 8: 142-151.

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Behavioral Phenotype of Prematurity

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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 cortical dysplasia

• Back SA, Miller SPM. Brain Injury in Premature Neonates: A Primary Cerebral Dysmaturation Disorder? Ann Neurol 2014;75:469-489

• Volpe JJ. 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. J Dev Behav Pediatr 2005; 26: 427-440.

• 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: 171-179.

• Lickliter R. The Integrated Development of Sensory Development. Clin Perinatol 2011;38:591-603

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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: 555-561.

• 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: 768-777

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Klein JM. Beyond Prematurity: Management of the 22-23 week

Gestation Premature Infant, The Iowa Way.

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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’. 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?”

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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)

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• 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

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Conclusion

• Behavioral Phenotype of

Prematurity associated

with increased difficulty

functionally

• Periviable birth = informed

choice

• Data key to understanding

and changing outcomes

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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

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Questions…?

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