The future of cleft care

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Medical Elective in India

Guy Stern  Medical Elective  in India.

I have wanted to be a facial reconstructive surgeon since before I went to medical school and my five years in Nottingham has only strengthened this dream. I saw my elective as an opportunity to further my ambitions and, with the help of Mr Anthony Markus, a maxillofacial surgeon in Bournemouth and chairman of a charity called Future Faces, I arranged to spend a total of six weeks in two renowned cleft centres in India, eventually seeing well over 100 cases covering the complete spectrum of this condition from an incomplete cleft lip all the way to a complete bilateral intra-ocular cleft.

Cleft deformities are caused by the failure of the maxillary and palatine processes to fuse during embryogenesis. Not only are these clefts disfiguring, but they make feeding very difficult and normal speech impossible.In the UK, and most of the western world, fewer than 1 in  2000 babies are born with a cleft lip and/or palate. However, in India this figure is more than 1 in 1000, which has created a substantial health burden in a population of 1.2 billion people. The reasons for the higher incidence are unclear, but it is probably a combination of genetic predisposition, higher rates of consanguinity and environmental factors such as diet and pollution. A second problem is that there are no decent government funded cleft centres in India and the vast majority of cleft-affected families cannot afford to pay for treatment in the private sector. Therefore, most of the good cleft centres in India are funded by foreign charities, and each centre has a huge caseload.

The management of clefts is multi-disciplinary, requiring multiple operations over several years, extensive speech therapy and orthodontics. For example, a complete unilateral cleft lip and palate, the most common presentation, requires at least four operations (lip repair, palate repair, alveolar bone graft and rhinoplasty), although some may also require a maxillary advancement to correct the maxillary regression commonly found in these patients, and/or a pharyngoplasty to improve their speech. Every centre has a slightly different protocol and some will choose to repair the palate in two stages, thinking that it has better long term results.

Thrissur, Kerala

 

My first three weeks were at the Charles Pinto Centre (CPC) for Cleft Lip and Palate based in the Jubilee Mission Hospital in Thrissur, Kerala. For the last 50 years, this centre has been run by Dr Hirji Adenwalla, now aged 81, who during this time has operated for free on more than 15,000 cleft patients and still works six days a week including three days in theatre! Ten years ago, the CPC became the first centre in India to be funded by the New York based charity Smile Train, the biggest cleft charity in the world and there are now over 70 of these centres in India and over 400 in the world. The cleft team here includes four cleft surgeons, two from a plastics background and two from a maxillofacial background, who during a six-day week, alternate three operating days and three outpatient clinics. There is also a maxillofacial surgeon who does all the bone work and operates on the days when the cleft team have their OP clinics. At the end of each day I would join the team on the ward round where we would see all the pre and post-op patients on the main ward, the ICU and HDU. Although I spent most days in theatre, observing or assisting an average of three operations a day, I would try to attend at least one OP clinic each week. The locals all spoke Malayalam, so I couldn’t directly communicate with them, but the doctors would translate for me and I managed to follow what was happening. Every new patient would see at least one of the surgeons and a trained counsellor who would teach them how to feed their babies and show them a slideshow of before and after pictures of past patients as well as recordings of speech. It was wonderful to see the parents’ mood change dramatically from despairing to hopeful over the course of their consultation. At first, the complexity of the operations was overwhelming and I found it very hard to follow what was going on in theatre. Fortunately, Dr Adenwalla and his team were  great teachers, and by the end of the three weeks I felt much more familiar with the procedures to the point where I could predict every stage of a Millard’s cleft lip repair.

Hyderabad, Andhra Pradesh

The second half of my elective was spent at the GSR Institute of Craniofacial Surgery in Hyderabad, Andhra Pradesh. This hospital, named after its founder and lead clinician Professor Gosla Srinivas Reddy, was opened in 2005 and is mostly funded by a Swiss charity called Cleft Children International (CCI), although wealthier families are asked to pay for part or all of their treatment depending on their income. There are two consultant maxillofacial surgeons who perform the vast majority of operations, Gosla Reddy and Rajgopal Reddy (simply known as Gosla and Raj), both of whom are dual qualified in dentistry and medicine – a very rare thing in a country where  maxillofacial surgery is a purely dental speciality. As well as Gosla and Raj, there is a constantly changing team of post-graduate dentists, on 4-week attachments, and clinical fellows, on one-year contracts, who are all learning the art of cleft surgery while doing all the junior jobs in the hospital.

Like at the CPC, most of my time was spent in theatre. However, because of the sheer number of other trainees, I spent less time scrubbed in and more time observing. I would also attend the morning ward round with Raj and the team briefing before theatre. While I was there, a Swiss couple and a photographer from CCI came to create a report about the hospital for fundraising. On one of the outpatient days, I went with them to a local village to meet a family with a cleft child and to find out more about how this condition had affected their home life. This day trip was one of the most valuable things I did whilst in  Hyderabad. As well as being a hospital, the GSR institute also houses 30 school-age children who were all born with clefts but whose families can’t afford to support them or have abandoned them. These children are all sent to good schools and get speech therapy several times a week. One of them, a 16-year-old boy called Dinakar, was particularly inspiring. He is extremely intelligent but was born with a bilateral cleft lip and palate to a very poor family. He was initially operated on by someone without the appropriate expertise which left him even more disfigured but has since had several revision operations at the GSR Institute and is being sent to the best school in Hyderabad with the hope of one day becoming a plastic surgeon himself

 

Discussion

The operations performed at both of these centres are broadly the same, with a few small differences in technique and protocol, but the atmosphere was noticeably different. The CPC felt quite relaxed and patient focused – Dr Adenwalla’s favourite quote is that “Medicine is not about curing, it’s about caring”. The GSR Institute, on the other hand, felt almost brutally efficient. For example, patients are only seen by a doctor in the outpatient clinic if they have an unusual presentation, otherwise it is felt that the front-of-house staff are competent enough to fully clerk them. However, with just two consultants compared to five at the CPC, they manage to perform the same number of operations, which is impressive. Because both of these centres were funded independently of the government, neither of them was particularly lacking in equipment but they were both still very thrifty when it came to reusing equipment that would be disposed of in the UK. Even the spare lengths of

suture material were re-sterilised and reused to save money. There is also a strong hierarchy within hospital teams and the junior members are terrified

of questioning their superiors for fear of insulting them or sounding stupid. I found this quite disconcerting at times and felt that it led to poor teamwork and communication.

 

Conclusion

Although not everything I experienced was brilliant, on balance I was pleasantly surprised at the quality of care and the level of expertise at the two centres and I found the whole experience extremely rewarding. It was also fascinating to see the differences in attitudes of both the doctors and the patients, as well as learning about the enormous public health issues that we in the UK don’t have to deal with. These incredible surgeons are bringing back the smiles of thousands of Indian children and it was both an honour and a privilege to work with them.