Cleft & Craniofacial Centre, SRMC, Chennai (Supported by The Smile Train since the year 2000)

Greetings from the Co-ordinator & the entire Cleft and Craniofacial team

This is the story of children born with cleft of lip and palate and their struggles to become normal looking, well-adjusted and productive individuals in a developing society which has little time and even lesser resources for them. It is also story of a service which helped achieve this and how it evolved over the years as well as that of the individuals behind this.

The Orofacial Cleft Deformity:

An orofacial cleft involves the lip, the palate, the tooth bearing part of the upper jaw. It affects the nose, the ear and the midface. It also affects the persons appearance, speech, swallowing, hearing and causes intense physical and psychological suffering for the child and the family. How does this happen? We know that the orofacial cleft happens due to failure of fusion of parts of the embryo in the 4th week of intrauterine life. Often the damage is already done even before the mother realises she is pregnant. However, what we do not know is to tell for sure how it happens - leave alone predict it or reliably prevent it, though there are several suspect genetic and environmental factors. There is much research over the years towards pinpointing the cause to prevent it, but still at the moment, it doesn’t look like there is any light visible in the tunnel. Our best bet yet seems to treat the baby once its born since all the deformities are eminently correctable. In spite of the difficulties in rehabilitating these children most of the world thankfully opts to keep these babies and look after them even when diagnosed prenatally.

The Multidisciplinary Cleft and Cranio facial centre at SRMC:

The cleft and Cranio-facial centre at SRMC was set up in the year 2000 generously supported by the. Smile Train which is a non-profit organisation dedicated to cleft care and the hospital administration. The initiative came from Dr Jyotsna Murthy who was a Paediatric Plastic surgeon and Mr Satish Kalra who was tasked with setting up Smile Train partners in India. To begin with ,top quality surgical correction was offered completely free of cost to patients. Due to her tireless and dedicated efforts along with her colleagues, the Center went on to be counted among the best centers anywhere in the world.

However, the problem does not get completely solved with correction of the lip or palate alone. For one the human body is so complex that imbalance in one structure in the body affects everything around it. There are several problems the child faces as it grows. It may have problems with speech, teeth, appearance of the face because of the faulty development of jaws etc. These need to be addressed as they happen or when growth is complete. The treatment needs periodic interventions sometimes once a year, at times more often according to the of the needs of the growing child and inputs from several medical and allied specialists.

We interact widely with the best experts in the field from all over the world so that we can incorporate the best practices and techniques in our work. A multicentre quality audit carried out in the year 2009 ranked our outcome in terms of appearance and growth amongst the top centres anywhere in the world including the Scandinavian ones. We could now more or less offer our patients what the Scandinavians could for their patients within our constraints of resources andfacilities.

How are these children managed? We see the child as soon as we can after its born. Sometimes patients are counselled prenatally if the diagnosis is antenatal by intrauterine ultrasound imaging which can happen as early as 14 weeks of gestation. The mother and her family is counselled by highly trained personnel well prepared to handle the situation. A specialised feeding nurse teaches her to feed the child in a specialised way and orthodontist works on the jaws and the team follows the child till the first operation at 3-6months when the lip is repaired followed by palate repair at one year. After this the child is followed up every year and interventions in terms of Surgery, speech therapy, Orthodontics, Clinical Psychology, Genetics etc are dealt with till he child is fully rehabilitated when he or she reaches adulthood

Smile Train, has been our partner for the past 20 years and supported our work like no other organisation can. With support from Smile Train and the hospital (SRIHER) and we not only offer all treatment related to cleft lip and palate completely free to the patients, we also support hospital stay, travel, food for the child and family. Smile Train also supports some deserving children in their education and career

The secondary deformities following primary cleft Lip and Palate repair:Unfortunately, in India like in many other parts of the developing world the quality of care varieswidely. Several children have their lips and palates repaired and are never followed up. Even these operations are sometimes done inexpertly by Surgeons who either had no interest in doing this delicate surgery or just did not have the necessary expertise. As a consequence of this, we get patients from all over the country who had primary lip and palate repair and little else at other centres. So, we went one step ahead and developed an unique protocol to suit our situation to deal with these deformities.

We recently celebrated completion of 12000 operations. All of them have multidisciplinary care some of which is delivered in very innovative ways. Our repertoire of operations extends to corrective surgery for cleft speech,

Skeletal corrections for midface deformities associated with the cleft and many others. We have evolved some unique innovations in surgical techniques. The centre has produced several Scientific presentations, publications and text book chapters. It has spawned several research projects, collaborated in international multicentre research projects, produced PhDs, trained fellows and trainees in Plastic Surgery, Speech and Language Pathology, Orthodontics, Clinical Psychology and Genetics. We have several ongoing research projects which have been funded by various national and International organisations including a recent research award from the Smile Train.

The way ahead:

In addition to supporting treatment, the Smile Train also monitors the quality of work of all its partners on an ongoing basis. We are pleased to say that they have found us worthy of being elevated as a model centre for the region, where doctors, dentists, speech therapists, nurses and others may be trained and difficult cases dealt with. Towards this end we have proposed one clinical and two travelling fellowship open to applicants interested in furthering their knowledge and career in Orofacial clefts. A proposal to upgrade the centre to centralise the services under one roof is also in the final stages of planning. I am extremely thankful to our patients, Smile Train, the hospital authorities, my colleagues and every single donor who has supported us in thought and deed. I hope that you will continue to bring joy and smiles to faces whom nature had unfortunately failed.