Charity

It is more than smiling-Rehabilitation of patients with cleft lip and palate in a rural Indian community

Vadodaria S; Mehta S, Batra P, Vasa S, Kelkar S, Gowans A, Worrell E, Gudmundsdottir E, Baker M, Cajander J, Persson C, Sell D, Medha P, Mars M, Lilja J.

A large number of newborn babies with oral clefts are found in developing countries with high birth rates (e.g. China, India, Indonesia, Africa, South America, South East Asia), where there are limited resources for dealing with the problem. It is estimated that 250,000 babies are born worldwide with cleft lip and palate deformities.
Before After 5 Years
230,000 of these occur in the developing or underdeveloped world.(1) Further, there is a huge reservoir of unoperated clefts in these areas of the world. The unequal distribution of expertise and resources is a global dilemma. Countries with rich resources have fewer cleft patients, while countries with minimum resources are inundated with more cleft patients than they can handle. Therein lies the challenge of matching the resources/expertise with the CLP population in the world.
This article deals with the conception and evolution of a novel cleft palate project in Mount Abu, Rajasthan, India . Traditionally cleft projects are motivated by a sense of charity, compassion, and public spiritedness towards those who belong to the more vulnerable and disadvantaged groups in society.
However, international cleft projects allow interaction with different cultures and socio-economic groups. This can be a very enriching experience, broadening international cleft specialists’ outlook of the world community, creating new bonds, and highlighting the sense of personal fulfilment at being able to do something positive, meaningful and totally voluntary in nature. This article describes the establishment and development of a cleft centre of a multidisciplinary team to provide comprehensive treatment to cleft lip and palate children.

Origin: 

The idea for such a programme began when one of the authors (Vadodaria S) was introduced to Sister Julia (Practising General Practioner) in Sheffield. She asked if he could be of help with his plastic surgical expertise in one of the hospitals of the Brahma Kumari’s international spiritual university at Mount Abu, Rajasthan, India.(3) He was immediately interested and knew that the preparation for a surgical project is as important as the actual implementation of the project itself. The author contacted one of the local Indian plastic surgeons (Vasa S), who had vast training in United Kingdom, to visit and assess the feasibility and appraise the local setup. After a positive feedback from him the first project was planned. The groundwork was undertaken by an ENT surgeon (Mehta S) working in Mount Abu, supervised by Dr Vasa.

The Hospital and facilities:

The Global Hospital and Research Centre Mount Abu is in Rajasthan (Desert state in the Northwest of India). The state has a population of 20 million. There are very few established cleft palate services and conservative estimates suggested 5,000 unoperated patients waiting for surgery.
The hospital is unique, almost like an oasis in the desert . From the surgical perspective it has very well equipped theatres with good anaesthetic machines and safe monitoring systems. The surgical microscope is an asset to the setup and proved to be useful in the cleft surgeries.
The team were able to establish a velopharyngeal clinic within 24 hours under the guidance of Dr Debbie Sell, Speech and Language therapist from Great Ormond Street Hospital, London. From an Orthodontic perspective the hospital has a dental suite with good laboratory support for model casting. The record collection was easy as impression materials for study model collection were readily available. There was a well-equipped radiology department with facilities for lateral cephalogram and orthopantomogram. The hospital has a computerised database for record collection. The records were collected using the data sheets from the Sri Lanka cleft project designed by Dr. Mickael Mars.
Pre-operative care was excellent with very well equipped wards, intensive care unit and monitoring facilities. Round-the-clock cover by a paediatrician and an anaesthetist was available. Local medical and paramedical staff included a surgeon; an anaesthetist, a dentist, a paediatrician, a radiologist, a biochemist and well trained nursing staff. The hospital also has a well-equipped blood bank.

The Evolution of the Project:

1st Visit (December 2002) was basically a reconnaissance visit. Two surgeons (Shailesh Vadodaria and Nick Hart) visited the centre on a one-off trip to assess the local situation. Sixty primary cleft surgeries were performed over a week . It was a very encouraging experience after evaluating the hospital setup, organisation of the mission and commitment of local staff.

2nd Visit (January 2004) was an expansion of the project with the addition of important internationally renowned people. Jan Lilja (Sweden), one of the most respected surgeons with involvement in cleft projects in Brazil, Romania, Africa, joined the team of plastic surgeons. The team also included Michael Mars (Great Ormond Street Hospital for children, UK) who has successfully directed the Sri Lanka Cleft Lip and Palate Projects (1984-2005). Two other orthodontists Alan Gowans (UK) and Sujata Kelkar (India) were also part of the project. A Speech therapist joined the team from Ahmedabad (India). Thirty primary cleft surgeries were performed during this visit. The team realised the great potential in the hospital and dedicated staff. A meeting was organised with the medical director Dr. Pratap Medha and all the specialists involved in the project to set out long term goals:

Aims of the cleft project:

  • - Treatment: Provision of direct care to cleft patients.
  • - Teaching and training: Provision of educational training to local population of doctors, nurses and paramedical personnel
  • - Long term follow up
  • - Research
  • - Promotion of self reliance and establishment of local team.

3rd Visit (December 2004) was a further expansion of the team as well as establishment of the Speech Clinic. Dr Sanjeev Vasa (India) joined the plastic surgery team. The most important inclusion was an internationally recognised speech therapist Dr Debbie Sell (UK), as well a local speech therapist from Bombay (India). We started collecting audiovisual recording of the speech samples, lateral videoflouroscopy and nasoendoscopy of cleft children. Thirty-six primary cleft surgeries were performed during this visit.

4th Visit (May 2005)This comprehensive team was further expanded with the addition of Nick Geddes, the Senior Medical Illustrator from Great Ormond Street Hospital, London, Elizabeth Gudmundsdottir a plastic surgeon from Gothenburg (Sweden), and Puneet Batra from Delhi (who trained at GOS with Michael Mars) joined the team. Nick Geddes became involved in teaching the local photographer as well as assisting in the Speech Clinic. Forty-three primary cleft surgeries were performed during this visit. The international team visits the Global Hospital twice a year on a regular basis. We started introducing more complex operation like pharyngoplasties, alveolar bone-grafts and perfoming cleft lip and palate repair in one stage with increasing experience working in the hospital.

The present cleft team

  • Overseas
- Plastic Surgeons:Jan Lilja (Sweden), Shailesh Vadodaria (UK), Elizabeth Gudmundsdottir(Sweden) Jenny Cajender (Sweden) Magnus Baker (Sweden)

- Orthodontist: Michael Mars, Alan Gowans (U.K)

- Speech Therapist: Debbie Sell (U.K) Christina Persson

- Medical Illustration: Nick Geddes (U.K)

- Dental Technician: Emma Worrell (U.K)

  • India
- Plastic Surgeons:Sanjeev Vasa, Sharad Mehta, Partha Sadhu- Audiologist: Mrs. Mehta

- Anaesthetist: Dr. Srimant

- Orthodontist: Sujata Kelkar, Puneet Batra

Role of Global Hospital and local resources: 

  • - The patient population needs to be screened so that only those suitable for surgery are presented to the team. This is organised by Dr.Vasa and Dr. Mehta.
  • - The Global hospital has wonderful arrangements for the local transport as well as accommodation for the cleft team.
  • - The team of western specialists funds its visit while the patients’ treatment and their follow-up are funded by the Global hospital.
  • - The Global hospital houses a unique database for patient records and post-operative care for all the patients.
  • - Dr. Sharad Mehta visited cleft centres in U.K. and completed a short-term fellowship in Sweden. Dr. Pueet Batra and Dr. Sujata Kelkar already had a wide exposure of cleft lip and palate treatment in U.K during their fellowships. Local speech therapists are being trained by Dr.Debbie Sell. Thus the local cleft team is becoming organised into a good multidisciplinary self-sufficient team.
  • - The hospital is now an accredited ‘Smile Train’ partner (An international cleft lip and palate charity organisation), with Dr.Partha Sadhu regularly conducting cleft lip and palate surgeries as an accredited plastic surgeon. (4)
  • - Dr. Sharad Mehta, the Ear, Nose and Throat Surgeon from the Global Hospital is already undergoing an accreditation process with Dr. H.S.Adenwalla, the Head of the plastic surgery department at the Charles Pinto Centre for Cleft lip and Palate Surgery, Trichur, India.

Treatment

Three hundred cleft procedures were performed during 4 surgical visits. These included cleft lip and palate repairs , secondary soft tissue corrections such as palatal fistula closure, correction of secondary deformities of lip and nose, pharyngoplasties, alveolar bone-grafts.

Training 

Dr.Sharad Mehta, a local surgeon was given opportunity to have ‘hands on’ training with visiting surgeons. He also visited cleft centres in the U.K. and completed a short-term fellowship in Sweden with Dr. Jan Lilja. Dr Mehta has independently performed 75 cleft surgeries. Sujata Kelkar, an orthodontist with special interest in Speech, has been trained to perform Nasoendoscopy along with a local Speech therapist. We are in the process of developing teaching videos of various cleft procedures for wide circulation. The hospital has ‘in house’ facilities of conference room and video- link between operation theatre and the conference room. We also plan to organise a cleft workshop for training and teaching purposes.

Research 

Records are collected according to Gothenburg protocol. A comprehensive computerised database is created of cleft lip and palate treatment at the Global Hospital. The project has been registered in the Institute of Child Health, London. Two papers from this project were presented in the International Congress of Cleft palate and related anomalies, Durban, South Africa in November, 2005. (Techniques of reconstructing difficult Hard Palate Defects)Vadodaria S et al. Helping them to smile- An overview of cleft lip and palate project at the Global Hospital, Mount Abu, Rajasthan, India-Vadodaria S ;Mehta S, Batra P, Vasa S, Kelkar S, Gowans A, Worrell E, , Sell D, Pratap Medha, Mars M, Lilja J) Challenges:  It was difficult to bring poorer patients from rural areas for essential follow-up. We plan to improve our communication with the families and provide funding for their follow-up visits, which are important for planning further treatment as well as for record collection. We visit the Global Hospital twice a year. It is an ongoing challenge to fund the international travel of the team members on a regular basis. We have received enormous help from the Cleft Lip and Palate Association of United Kingdom and from Dr. Michael Mars’ research fund, Great Ormond Street Hospital, London for this.

Conclusions

The cleft lip and palate project at the Global Hospital, Mount Abu is a unique experience of learning, teaching, serving and training for all the people involved. It also gives an opportunity to cleft specialists from different parts of the world to develop a special fellowship in a remote corner of India.

References:

  • - Michael Mars, Key Note Address lecture , 10th International Congress of Cleft Palate and related Craniofacial Anomalies, November,2005, Durban, South Africa
  • - Reeve ME, Groce NE, Persing JA, Magge SN., An international surgical exchange program for children with cleft lip/cleft palate in Manaus, Brazil: patient and family expectations of outcome. J Craniofac Surg. 2004 Jan;15(1):170-4.
  • - www.bkwsu.com
  • - www.smiletrain.org