Why cleft lip and palate need not be death sentences for patients

A child with cleft lip awaits for his turn to the theater for corrective surgery at Kisumu District hospital on November 13,2016. [File, Standard]

Much has been said about the Universal Health Care (UHC). As the country gears towards attaining health for all, there are vital steps that need to be taken in order to achieve this goal.

The importance of healthcare financing cannot be overemphasised. Our healthcare system must be adequately financed to ensure it functions smoothly and basic services are offered at the county hospitals.

As a country, we cannot achieve UHC if we do not address ‘neglected surgical conditions’ such as cleft lip, cleft palate, hernia, cataract, club foot and fistula. These conditions have been largely neglected yet they can be corrected at an early stage in life when detected and avert life-long disabilities.

Proper data collection

A visit to a normal maternity hospital will reveal that even birth records do not capture some of these conditions thus it is not easy to track the children once they leave the hospitals. We need to ensure our system has a proper data collection method that helps us track and trace special cases that require early intervention.

This will also help us eradicate the backlog for some of these conditions and spare those affected from societal isolation as they are commonly associated with all manner of things, from taboos and traditions to social exclusion.

Take for example cleft lip and palate, contrary to common and unfounded beliefs, cleft lip and cleft palate is not a curse, it is not as a consequence of promiscuity or a disobedience to the gods or a stroke of bad luck as many myths would have it.

What is cleft lip and palate? It is a condition that develops during formation of the baby in the womb, as early as 2-3 months into pregnancy. There is no known cause for cleft lip and palate, but research does show a combination of hereditary factors and environmental factors as possible contributory factors.

Lack of Vitamin B or folate before and during pregnancy, smoking, alcohol consumption and exposure to some toxins and medications have been identified as risk factors to the development of cleft lip and palate. An estimated 1,300 babies in Kenya are born every year with cleft lip and palate. Thousands more still live with untreated clefts.

When a baby is born with cleft lip and palate, the first people to be affected emotionally and psychologically are the parents and the nuclear family. The disfigured look of the baby’s face is confusing, often times traumatising, some parents even abandon their children in shock and disbelief.

The baby has difficulties breastfeeding and may end up with malnutrition if the mother isn’t taught how to feed the baby. Some babies have difficulties breathing whilst others suffer recurrent infections. Some even die before they reach their first birthday.

As these children grow, if they make it past their first year, they are faced with difficulties in speaking in addition to how their faces look. Many of them are hidden away from society, thoroughly and negatively affecting their socialization like other children. The parents, and especially the mother, are faced with the difficult task of caring for a child who is much more demanding and for many it is with very little support from the society that stigmatises, laughs at and calls their children names.

Most patients with cleft lip and palate defects cannot afford surgery and treatment for the condition thus the need to support local interventions to finance them.

In Kenya, most insurance companies do not cover cleft lip and palate deformities as they are considered congenital, yet the surgery and treatment is not affordable to many. It is important for the government to address this policy gap in order to support those affected as we strive to achieve UHC and leave no one behind.

Globally, 1 in every 700 children is born with a cleft lip and/or palate. Clefts are the leading birth defects in many developing countries. Millions of these children in developing countries with unrepaired clefts live in shame, but more importantly, have difficulty eating, breathing and speaking.

In the hands of an expert, cleft repair surgery is simple, and the transformation is immediate. Unfortunately most government hospitals do not have specialised programmes to address these cases.

Most of them are taken care of by charitable organizations working with local hospitals. One of the charitable organizations is Smile Train.

Smile Train provides training and funding to empower local doctors in 85+ developing countries to provide 100 per cent free cleft repair surgery in their own communities.

Dr Njoroge is Vice President and Regional Director for Smile Train Africa