Summary of activities related to FASD at the Ron Joyce Children's Health Centre, Hamilton, ON, Canada presented at: FASD - Achieving New Heights Together in Burlington, ON, Canada on March 22, 2019.

1. FASD at RJCHC
Olaf Kraus de Camargo
Twitter: @DevPeds

2. “There is no place in Hamilton to
get a diagnosis of FASD”

3. Developmental Paediatrics
• “Developmental Pediatrics is a branch of medicine and a subspecialty of
Pediatrics that focuses on developmental trajectories of children with
congenital or acquired disorders and/or individual variations in physical,
motor, cognitive, sensory and social-emotional development.
Developmental Pediatricians provide highly specialized health care to
children of all ages and developmental levels in the context of their
families and communities. The discipline also encompasses the treatment
of children’s behavioural responses to those challenges. The overall goal
is to promote and maintain the developmental and emotional well-being of
all children and their families, especially those who are most vulnerable.
The subspecialty promotes preventive strategies that minimize the
prevalence and impact of disorders of development. Developmental
Pediatrics is concerned with both the individual developmental profile and
the impact of the children’s psychosocial and cultural milieu on their
lives.”
http://www.royalcollege.ca

4. Diagnosis of FAS
ICD – International Classification of Diseases (WHO)
LD2F.00 Foetal alcohol syndrome
• Description: Fetal alcohol syndrome is a malformation syndrome caused by maternal consumption of
alcohol during pregnancy. It is characterized by prenatal and/or postnatal growth deficiency (weight and/or
height <10th percentile); a unique cluster of minor facial anomalies (short palpebral fissures, flat and
smooth philtrum, and thin upper lip) that presents across all ethnic groups, is identifiable at birth, and does
not diminish with age. Affected children present severe central nervous system abnormalities including:
microcephaly, cognitive and behavioral impairment (intellectual disability, deficit in general cognition,
learning and language, executive function, visual-spatial processing, memory, and attention).
https://icd.who.int/browse11/l-m/en

5. Diagnosis of FASD
Special considerations:
• FASD w/SFF should be
referred to clinical genetics
Cook, J. L., Green, C. R., Lilley, C. M., Anderson, S. M., Baldwin,
M. E., Chudley, A. E., … Network), (Canada Fetal ALcohol
Spectrum Disorder Research. (2016). Fetal alcohol spectrum
disorder: a guideline for diagnosis across the lifespan. Canadian
Medical Association Journal, 188(3), 191–197.
https://doi.org/10.1503 /cmaj.141593

6. Children in Hamilton
• Total: approx. 100.000
• Expected Cerebral Palsy (1:1000): 100
• Expected Down Syndrome (1:750): 133
• Expected Autism Spectrum Disorder (1:68): 1.470
• Expected FASD: (?)

7. FASD in different Populations
Lange, S., Burd, L., Popova, S., Rehm, J., Gmel, G., & Probst, C. (2018). Global Prevalence of Fetal Alcohol Spectrum Disorder Among Children and Youth.
Obstetrical & Gynecological Survey, 73(4), 189–191. https://doi.org/10.1097/01.ogx.0000532194.88210.00
Children w/FASD in Hamilton: ~2000-3000?
Popova, S., Lange, S., Chudley, A. E., Reynolds, J. N., Rehm, J., May, P. A., & Riley, E. P. (2018). World Health Organization International Study on the
Prevalence of Fetal Alcohol Spectrum Disorder (FASD). Centre for Addition and Mental Health.

8. Services at the “Ron Joyce”
• All Encounters in 2018 with
FAS/FASD in Diagnosis or Problem
List
• “Encounter” - any contact,
attended and missed
appointments, including phone
calls

9. Patients with…
• CP: 322 (100)
• DS: 111 (133)
• ASD: 948 (1470)
• FASD: 44 (2500) (?)

10. Referrals in 2015/2016
• FASD?
• Hamilton: 15
• Region: 5
• Confirmed Diagnosis:
• Hamilton: 5 (33%)
• Region: 0 (0%)
• ASD?
• Hamilton: 300
• Region: 88
• Confirmed Diagnosis:
• Hamilton: 133 (44%)
• Region: 23 (26%)

11. Genetics
• In 11 of the 44 children a
genetic work up was done
• 7 had clinical significant
findings!

12. Families
• Of the 44 children,
only 4 live with at least
one biological parent
• 60 – 80% of children
with FASD live in
foster care
Wilhoit, Lauren F., David A. Scott, und Brooke A. Simecka. 2017. „Fetal Alcohol Spectrum Disorders: Characteristics, Complications, and
Treatment“. Community Mental Health Journal 53(6):711–18.

13. Toxic Stress
• Toxic stress refers to strong,
frequent, and/or prolonged
activation of the body’s stress-
response systems in the absence of
the buffering protection of adult sup-
port. Major risk factors include
extreme poverty, recurrent physical
and/or emotional abuse, chronic
neglect, severe maternal
depression, parental substance
abuse, and family violence.
• Is associated with “coronary artery
disease, chronic pulmonary
disease, cancer, alcoholism,
depression, and drug abuse, as well
as overlapping mental health
problems, teen pregnancies and
cardiovascular risk factors such as
obesity, physical inactivity, and
smoking.”

14. RJCHC Care Teams
• Most children were seen
by several professionals
• Nursing, BT, SW, OT, PT,
Psychology, MD, other
therapists
• Average: 3 (1 - 10)

15. ASD Encounters in 2018
• Total: 17207 encounters related to
948 patients
• Average: 18 encounters
• Median: 5 (1 - 399)
• Percent of HF (>50): 7%

16. FASD Encounters in 2018
• Total: 839 encounters related to 44
patients
• Average: 19 encounters
• Median: 8 (1 - 191)
• Percent of HF (>50): 15% (7)

17. Other Diagnoses
1 - 7 in total
Average 4 diagnoses

18. Medications
0 - 6 concomitantly
Average 2 meds

19. Treatment and Support
• Diagnosing the cause of
neurodevelopmental
problems is important for
public health and prevention
• Treatment depends on the
functional profile of each
child, their individual context
and the people around
them.
Hanlon-Dearman, A., Green, C. R., Andrew, G., Leblanc, N., & Cook, J. L. (2015). ANTICIPATORY GUIDANCE FOR CHILDREN AND
ADOLESCENTS WITH FETAL ALCOHOL SPECTRUM DISORDER ( FASD ): PRACTICE POINTS FOR PRIMARY HEALTH CARE PROVIDERS. J
Popul Ther Clin Pharmacol, 22(1), 27–56.

20. FASD Statement
• Accept children based on limitations in functioning and participation regardless of
suspected or confirmed etiology (e.g. FASD, genetic, complex trauma, prematurity,
multifactorial)
• Focus on a comprehensive & holistic developmental assessment to generate an
International Classification of Functioning (ICF) - based diagnostic formulation and
recommendations
• Communicate findings and recommendations to parents, teachers and clinicians
• Focus on assessing function and determining needs rather than determining if a
child does or does not qualify for a specific medical diagnosis
https://pondaca.files.wordpress.com/2015/11/ponda-network-position-statement-on-fasd-2015.pdf

21. Summary
• FASD is diagnosed and treated by a multi-professional team
according to the needs of the child and the family at the RJCHC!
• The referral rate is extremely low, indicating a low level of awareness
in the community
• A high proportion of children with neurodevelopmental disabilities
present with genetic abnormalities, which is also the case in FASD
• Children with neurodevelopmental disabilities (confirmed FASD or
not) need tailored supports according to their needs that can
include diverse therapists, support workers and medications.

22. Staff involved with FASD in 2018
Behaviour Therapists
MAHATOO-TARCEA, ELIDA
ORPHANACOS, STEPHANIE
POOLE, ALLISON
SVEC, ADRIANA
WYNNE, KELLY D

23. Staff involved with FASD in 2018
Child Psychiatrists
LIPMAN, ELLEN
SASSI, ROBERTO
Child Youth Worker
OOSTERVEEN, AMY

24. Staff involved with FASD in 2018
Developmental Paediatricians
HARMAN, KAREN
HOGAN, GILLIAN
JOHNSON, KASSIA JEANNETTE
KRAUS DE CAMARGO, OLAF
MAHONEY, BILL
MESTERMAN, RONIT

25. Staff involved with FASD in 2018
Early Childhood Resource Specialists
DRYSDALE, LINDA J
TOMALTY-NUSCA, LORI
Mental Health Clinician
COPELAND, KAREN

26. Staff involved with FASD in 2018
Nursing
LANDRIAULT, BRIGITTE
MILLER, JENNIFER
SMITH, CINDY

27. Staff involved with FASD in 2018
Occupational Therapy
GAIK, SANDY
LEE, LOWANA L
MALCHOW, TERRI
MORRISON, ANDREA
STICKNEY, DANIELLE
WARDROPE, BROOKE

28. Staff involved with FASD in 2018
Parent Therapists
GORKA, TRACY
KAUFHOLD, CAROLE
NYMAN, GERRI

29. Staff involved with FASD in 2018
Psychologist
NG, OLIVIA
GRUNBERGER, AVRAHAM
Psychometrist
APRO, SHELLEY
Physiotherapist
KAY, BERNETTE ELIZABETH

30. Staff involved with FASD in 2018
Residents
HOWSON-JAN, BETHANY
JAFRI, SIDRA KALEEM

31. Staff involved with FASD in 2018
Speech-Language-Therapist
ZUK, CYNTHIA
Social Worker
LESTER, REBECCA
Therapeutic Recreation
MCARTHUR, DENISE

32. Thank you!