In the last 30 years, implementation of high technology neonatal intensive care has revolutionized the outcome for tiny babies at the threshold of viability, who previously would have died. These "new survivors" are at risk of brain injury and other long-term effects on organ systems and on their growth, behaviour and development, but little is known about this. The BC Children's Hospital Neonatal Follow-Up Programme, of which I was director from 1983 to June 2003, was started in 1983 to systematically collect relevant outcome information about these children to evaluate results of care in the newborn period and to advance knowledge about the outcomes of these "new survivors". Data from this programme is used to advance neonatal care techniques and after-care in the community. In addition to local audit and research projects, we participate in multicentre and international studies designed to answer critical questions in neonatal and perinatal care.

In addition to participating in a wide range of multicentre and international studies, I have two principal areas of research focus:

Long-term outcome of babies of < 800 grams birth weight
We have systematically followed a group of 120 babies of 800 grams or less from birth to age 17 years, and compared medical, social and educational outcomes of these children with a cohort of control children of comparable sex and sociodemographics recruited at age 3 years. Data from this study were published when the children were 8 - 9 years and we have just completed the 17 - 18 year section of the study and are analyzing data and writing up the results. In summary, keeping alive the smallest survivors of neonatal intensive care in the 1980s resulted in a surprisingly low major impairment rate (14%) but a high incidence of learning disabilities (60%), which caused difficulty in school. In contrast to the controls, nearly half of the tiny babies with learning disabilities had multiple areas affected. The remaining 26% of patients were apparently free of impairment and comparable to controls. Data analysis and interpretation is ongoing regarding adolescent health issues, cognitive performance and the motor characteristics of this group of children and controls at 17 years.

Long-term effects of early pain and stress in extremely low birthweight children
Neonatal illness and the process of intensive care involves multiple episodes and interventions which induce pain and stress. Our research interest was triggered in this area by questions about pain from parents of tiny babies. In collaboration with Dr. Ruth Grunau we started to systematically investigate whether there were in fact differences in pain behaviour in tiny babies compared to bigger prematures and term controls. We also looked at perceptions of pain in our older ex-tiny babies compared to controls. These were the first studies looking at potential long-term effects of early pain in NICU survivors. From this beginning has developed a research group using sophisticated measures to look at behavioural, physiological and endocrine responses to early pain and stress in the neonatal period and beyond. One of the objectives of this group of studies is to investigate the potential correlation between early pain and stress, and some of the later developmental and behavioural characteristics of our ex-tiny baby survivors in mid-childhood and beyond.

Rogers M, Fay T, Whitfield MF, Grunau RE, Tomlinson J. Aerobic capacity, strength, flexibility and activity level in unimpaired ELBW (<800 gram) survivors at 17 years of age compared to term born controls. Pediatrics. In press Jan05.

Grunau RE, Whitfield MF, Fay TB. Psycho-Social and Academic Characteristics of ELBW (<800g) Survivors in Late Adolescence Compared to Term-Born Controls. Pediatrics 2005, 114, e725-e732.

Whitfield MF. Psychosocial effects of intensive care on infants and families after discharge. Seminars in Perinatology 2003, 8; 185-193.

Grunau RE, Whitfield MF, Davis C. Pattern of Learning Disabilities in Extremely Low Birthweight children at 8 1/2 years. Archives of Pediatrics and Adolescent Medicine. 156:615-20, 2002.

Holsti L, Grunau RVE, Whitfield MF. Developmental Coordination Disorder In Extremely Low Birth Weight Children ( £ 800 grams) at 9 Years. Journal of Developmental and Behavioral Pediatrics; 23: 9-15, 2002.

Whitfield MF, Grunau, RVE. Behaviour, pain perception and the extremely low birthweight survivor. B Vohr Ed, Clinics in Perinatology 27:363-379, 2000.

Grunau, R.E., Whitfield, M.F., Petrie, J. Children’s judgements about pain at age 8-10 years: Do extremely low birthweight ( < 1000 g) children differ from full birthweight peers? J Child Psychol Psychiat. 39(4):587-594, 1998.

Whitfield MF, Eckstein Grunau RV, Holsti L. Extreme premature ( £ 800 g) schoolchildren: Multiple areas of hidden disability. Archives of Disease in Childhood. 77:F85-90, 1997

Grunau, R.V.E., Whitfield, M.F., Petrie, J.H. Pain Sensitivity and temperament in extremely low birth weight premature toddlers and preterm and full-term controls. Pain, 58: 341 - 346, 1994.

Queen Elizabeth II Golden Jubilee Medal - 2002

Ruth Grunau, PhD/RPsych

Tim Oberlander, MD, FRCPC

Anne Synnes, MDCM, FRCPC, MHSc

Multidisciplinary staff of the Neonatal Follow-Up Programme, BCCH