Comprehensive cleft care

In India, one in 700 children is born with a cleft lip. In a situation like ours, where we struggle to provide basic primary healthcare to children, issues like cleft care take a back seat. In the long list of healthcare priorities for the Indian government, cleft care does not claim its merit. To this effect, the onus lies largely on healthcare practitioners to support the Indian healthcare system, especially on less talked about issues like cleft care.

Parents of children who are born with a cleft in India sometimes consult doctors as late as teenage or after adulthood ignorance, lack of financial resources or fear of surgery. In developed countries, the condition is usually fixed in the first six months of life.

Owing to this, it is usually a paediatric cleft surgeon that intervenes surgically, which is not the ideal scenario. Ideally, it should be a gynaecologist or a sonologist who can identify such defects at the foetal developmental stage, thus ensuring early intervention.

Comprehensive care is the goal for all children born with cleft lip and palate deformities. However, it is easier said than done. This involves many interventions, both surgical and non-surgical over a period, ranging from the birth of the child to the time he or she is an adult.

This involves necessarily a team of carers coming in at different time periods as well as coordinating care to obtain optimal outcomes. This could be a logistical nightmare at worst and a significant burden of care for the parents and the child at best. It is, however, important for better surgical outcomes and eventually improved the quality of life for a child.

With prenatal diagnosis becoming more common, comprehensive care begins even before the child is born. Counselling the parents regarding, what to expect when the child is born and how to cope with this bad news itself is a challenge and does not happen in most instances.

In centres where treatment for clefts starts even before doing the first surgery (this is called pre-surgical orthopaedics, the most popular form of which is the Naso alveolar moulding), the baby needs to be seen at the centre in the first week of life itself.

Often the primary care physicians (referring doctors) are not aware of this and delay the referral, by which time it is too late to start this modality of treatment even though it has longer-lasting results after surgery.

The ability to follow a successful protocol depends on carrying out interventions at a particular age, stage of development of the child and this too could be a challenge considering logistical as well socio-cultural issues with the parents. Interventions like speech therapy and orthodontics often are intensive and might require regular visits for relatively long periods of time and this is a huge logistical challenge even for urban parents.

Ignorance of protocols, of availability of nearby treating centre, affordability, fear of surgery are still challenging existing to a lesser degree. Finally, convincing the financial donors, that without comprehensive care, the quality of outcomes is significantly compromised, that interventions like orthodontics are not mere cosmetic dressing up is also often a challenge.

However, numerous non-government organizations are working to make comprehensive cleft care accessible and affordable in India through their large network of hospitals and doctors across India including the far east.

While their work is admirable, the scale of the problem is too large for them to solve it by themselves.

Therefore, the government should create an inclusive healthcare system that addresses cleft care as one of its priorities.

Given the current pressure on public health, it will become more and more important for such organizations that drive funding as well, to address the issues of accessibility and affordability by scaling their programs.

(The writer is a maxillofacial surgeon and smile train project director at Bhagwan Mahaveer Jain Hospital)