The Sri Lankan Cleft Lip and Palate Project 19842009

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The Sri Lankan Cleft Lip and Palate Project
1984-2009

• Dr Michael Mars
• DSc(Hon), PhD, BDS, FDS, DOrth, FRCSLT (Hon),
  FSLCP (Hon)
• 30th Birthday of CLAPA
• 30th May 2009

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Sri Lankan Cleft Lip and Palate Project 1984 -
2009
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Why Sri Lanka?

• Small island, large population, relatively
  confined
• Reasonable transport
• High literacy rate
• Hospitals and medical schools based on British
  model
• Professionals speak English, students taught in
  English
• Local organiser of high calibre

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Sri Lanka Cleft Lip Palate Project1984 - 2009

• Aims
• Treatment
• Teaching
• Research
• Long term follow up

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Pre- and Post Primary Surgery at 15, 16 and 25 yrs
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Priority Grouping of Patients 1985 Visit

• Group 1 (N207)
• Unoperated Cleft Lips with or without Cleft
  Palate
• Group 2 (N319)
• Unoperated Cleft Palates
• Group 3 (N309)
• Operated Cleft Lip / Palate requiring revisionary
  surgery
• Group 4 (N417)
• Miscellaneous Disabilities

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Not Surgical Safari Clefts exclusively Self
sufficiency
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Team and Counterparts - Galle 1990
Plastic, Maxillofacial, ENT Surgeons,
Orthodontists, Speech and Language Therapists
Audiological Physicians, Paediatricians,
Anaesthetists, Ward, Theatre and Dental
Nurses, Dental Technician, Freight Manager,
Medical Photographer, Administrator.
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• 6 surgical visits
  
• 1985,1986, 1990 (Galle), 1999, 2001, 2002 (Kandy)
• 13 longitudinal data collection visits
• 1984,1985,1986 (twice), 1988, 1990 (twice),
  
• 1995, 1998, 1999, 2000, 2002,2009
• Recall rate 66 UCLP, 90 BCLP
• 1997 Established First Speech Language
• Therapy Graduate Programme - Colombo

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Treatment
900 operations performed
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Planning Safe Surgery
Palates early in the visit Lips later in the
visit
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• Cash handouts might sustain you for a few months,
  at the end of which your problems remain.

Nelson Mandela
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• Remember the old Chinese proverb Give a man a
  fish and you feed him for a day. Teach a man to
  fish and you feed him for a lifetime

John B Mulliken, New England Journal of Medicine
2004
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• Remember the old Chinese proverb Give a man a
  fish and you feed him for a day. Teach a man to
  fish and you feed him for a lifetime, but the
  teacher should be skilled at fishing.

John B Mulliken, New England Journal of Medicine
2004
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Training for Sustainability

• In Sri Lanka
• Multidisciplinary Clinic Masterclass
• Extensive Lecture Programme
• Hands on Surgical,Orthodontic, Speech and
  Language Therapy, ENT and Audiology, Paediatric,
  Nursing Anaesthesia Training
• Speech and Language Therapy Graduate Programme

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Training for Sustainability

• In the UK
• Visiting Sri Lankan Multidisciplinary Team
• Visiting Surgical Fellowships
• Visiting Orthodontic Fellowships
• Visiting Speech Language Therapy Fellowships

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Speech therapy programme
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Speech Therapy Graduands
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A good result?
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When to change faces?

• Facial deformity is
• Embryologically
• determined ?
• or
• The result of surgery?

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1992 Eurocleft Study
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3
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GOSLON Grouping
Mars et al CPCJ 1992 ,29 5 405-408
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Sri Lankan UCLP 13 M and F
Sri Lankan Surgeons - Wardill-Kilner
GOSLON Grouping
Totally Unoperated (n 51)
Lip Surgery (n 37)
Lip Palate Surgery (n 37)
0
20
40
60
80
100
12
3
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Mars M and Houston WJB CPJ 1990, 27 7-10
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Lip Repair Vs Lip and Palate Repairgt19 years
British Surgeons - Von Langenbeck
Totally Unoperated
n44
n45
Lip Surgery
Lip and Palate Surgery
n81
0
20
40
60
80
100
1
2
3
4
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Mars, Batra, Worrell and Petrei 2005
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UCLP Conclusions

• Patients who have no surgery whatsoever have the
  potential for near normal facial growth.
• Lip surgery causes moulding of the dentition but
  does not affect mid-face growth.
• Palatal surgery in infancy has the potential to
  cause mid-face growth disturbance

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Outcome for unoperated subjects beyond 13 years
of age (n42)Facial growth Speech
Articulation Grouping
GOSLON Grouping
100
100
80
80
60
60
40
40
20
20
0
0
1 2
3
4 5
1 2
3
4 5
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Studies of very delayed palatal repair in late
childhood / adolescence / adulthood

• High incidence of postoperative VPI
• In the main too late for the adults!
• Selected adolescents may benefit

(Sell et al. 1987, Sell, 1992, unpublished PhD
thesis)
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Sri Lanka 77 UCLP, Palate Repair (range 4.3
7.0 years)

• Over 10 years old at data collection
• Severe articulation problems
• 81 preoperatively
• 70 postoperatively
• In 10 children,
• normal speech developed spontaneously with no
  SLT,
• no audiology input, and
• no secondary velopharyngeal surgery

• Birkett L. Nayak J. Sell D. Dent H. Mars M.

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Cleft lip and palate is not a priority, it is
not life threatening, just as the treatment of
varicose veins is not a priority.Professor of
Surgery, Galle, Sri Lanka 1998
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Steve is a really outgoing guy a GOS and
personal (his!) success story. Steves mum
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• Infants aged 0 - 5 months who are not breast fed
  have 7 fold and 5 fold increased risks of death
  from diarrhoea and pneumonia respectively,
  compared to breast fed infants.

Black, Morris, Bryce The Lancet Vol 361, June 2003
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Nutrition
How many cleft infants survive to surgery?
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Life experience of 32 unoperated adults at time
of surgery Sri Lanka

• No education 17
• Employed 7
• Married 2

A Habel, Unpublished research
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Dissatisfaction With Speech
80
70
60
50
Percentage
40
30
20
10
0
NORMS
CL
UCLP
BCLP
CP
A Habel, Unpublished research
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Dissatisfaction With Appearance
70
60
50
40
Percentage
30
20
10
0
NORMS
CL
UCLP
BCLP
CP
A Habel, Unpublished research
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Handkerchief sign
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From frozen watchfulness to emerging from the
shadows
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• The wounds that cannot be seen are more painful
  than those that can be treated by a doctor.

Nelson Mandela
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• If we are concerned then how can we make a
  significant difference?

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CLAPA Sri Lanka
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The Tsunami, Boxing Day 2004
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Patrons Board Members
MAGE Medical Aid to Galle and Environs
Patrons Lady Braithwaite Professor Sir David
Weatherall Professor Susirith
Mendis Professor Ariananda Chairman Dr
Michael Mars Secretary Mr Chris
Rocker Treasurer Dr Tony Sirimanna Members
Mr Patrick Foster Dr Debbie Sell Miss Alison
Wisbeach

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The Field Hospital Maternity
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The Problem to Overcome
A current temporary hostel for medical students

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Architects Impression
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Progress and Timescales
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February 2009
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AcknowledgementsParticipants in Sri Lanka 1984 -
2005
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