For as long as 12-year-old Preethy (name changed) could remember, the eyes of everyone she met were drawn automatically to her upper-lip before they took in the rest of her. Along with the blatant stares came either pity or scorn, often in equal measure. And since her disability also made speaking significantly difficult, Preethy, hailing from Anantapur district in Andhra, found herself doubly isolated and rejected. What's worse, even her own family seemed to never support and care for her the way she needed them to.
Born with a cleft lip and palate, Preethy could have easily been spared this story of everyday neglect and pain. But ignorance, poverty or superstition mean that she and thousands like her continue to suffer.
Cleft lip or palate anomalies are the most common birth defects affecting the facial region. According to one study by the Indian Council of Medical Research (ICMR), roughly 35,000 children are estimated to be born with this condition in India every year. Despite such a high number of cases, however, a lack of public awareness haunts victims of this congenital condition, says Dr JA Nathan, maxillo-facial surgeon at Apollo Hospitals, Chennai.
Suffering for superstition and shame
Because there is a lack of awareness about the medical grounds for this condition, says Dr Nathan, a cleft lip/palate is often considered a curse or punishment for sins, especially in remote rural parts of the country. â€śI have seen patients who are over 18 years and have a cleft lip and palate. They are shunned socially, receive little education and live poor lives,â€ť observes Dr Nathan.
Even where superstition doesnâ€™t enter the picture, he adds, families suffer from a considerable sense of shame when a child is born with a cleft lip/palate. He narrates the story of a family from Chennai that went through months of trauma, as they felt ashamed to show their newborn to family members or relatives.
While society focuses on the way patients with cleft anomalies look, the effects on their development are most significant, explains Dr Nathan. Infants with a cleft palate, for instance, can have difficulties with feeding in the first few months, because of gaps between the palate and nose, and require special care when it comes to feeding. Without appropriate medical advice on such matters, these infants can suffer from malnutrition, poor health and respiratory and nasal diseases. Another problem, he points out, is that the lips and palate play important roles in developing speech, and cleft anomalies can seriously affect speech. â€śThe speech centre, for any individual, is formed within the first four years. So, if they donâ€™t pick up speech within that time, they may never speak properly,â€ť he says. Patients with untreated cleft lip/palate conditions can also develop hearing problems as well as frequent illnesses of the ear, nose and throat.
What is cleft lip/palate and what causes it?
A cleft lip or palate is formed when tissues of the lip and palate do not fuse from both sides in the 4th to 7th week of pregnancy, leaving a split or opening in the roof of the infantâ€™s mouth. This split can be formed in the upper lip, the palate, or both, and could range from a small notch to a wide gap extending into the nose. It can affect one side of the mouth (called unilateral) or affect both sides (bilateral cleft).
While experts havenâ€™t been able to pinpoint the exact cause of this condition, studies have found that a combination of factors contribute to the problem. One of the most important factors, says Dr Nathan, is a lack of folic acid in the motherâ€™s diet during pregnancy, which is an important synthetic vitamin that helps avoid a range of birth defects.
Another important factor is the environment in which a woman undergoes pregnancy, particularly the consumption of certain medications in the early, formative stages of the pregnancy. Finally, genetics also plays an important role, though the condition is not always directly inherited, says Dr Nathan, adding that consanguineous marriages increase the risk of the condition manifesting.
Importantly, says Dr Nathan, a cleft lip is surgically treatable very early in an infantâ€™s life. â€śWe follow the golden rule of 10: that an infant can be operated upon when it weighs 10 pounds (about 4kg) and has a haemoglobin level of 10 gm. According to Indian standards, even 8 gm of haemoglobin is sufficient. So we can operate as early as 5-6 or even 3-4 months,â€ť he explains. With cleft palates, surgery is encouraged at around 16-18 months, he adds.
Dr JA Nathan, Maxillo-Facial Surgeon, Apollo Hospitals, Chennai.
In the last decade or so, India has made great strides in preventing and treating cleft lip/palate. On the prevention front, ante-natal scanning facilities, and greater awareness about maternal nutrition have contributed to reducing the incidence of this condition to a certain extent.
More significantly, the growth of maxillo-facial surgical specialisation across the country has meant increased access to corrective surgeries outside of metro cities, says Dr Nathan. This has meant that many more patients receive surgical treatments much earlier in their lives.
Thereâ€™s also been a growth in expertise, he adds, which has meant that patients can achieve much higher levels of functionality than before. â€śEarlier, surgeons would just do the primary lip and palate surgeries and patients would go away,â€ť he explains, noting that further surgeries to correct deformities of the jaw and nose would rarely be taken up.
Images of an infant before and after a cleft surgery by Dr. Nathan
â€śFor instance, for several of these children who are at their growing stage, the upper-jaw grows deficiently because of scarring in palate, causing facial imbalance and chewing inefficiency. In the last eight to 10 years, a newer kind of technology has come up called distraction osteogenesis, where we try to distract or move the jaw and grow new bone there,â€ť he says. Similarly, he adds, improvements in bone grafting, orthodontics, orthognathic surgery and rhinoplasty mean that patients with cleft anomalies can undergo important corrections in nose and teeth alignment and look and function absolutely normally. â€śAll of this wasnâ€™t possible earlier because maxilla-facial surgery was not advanced,â€ť he explains.
Indeed, says Dr Nathan, the cutting edge of cleft treatments may involve intra-uterine repair of such problems before birth in the future.
Still a long way to go
Even as all of these advancements give hope, says Dr Nathan, India still has a long way to go when it comes to helping patients with cleft anomalies. â€śIn a country like ours, we have such a huge population, and literacy is more in certain regions. The key to this problem is prevention. We need to focus on educating people about cleft lip and palate.â€ť
The article was created by TNM Brand Studio in association with Apollo Hospitals, and not by TNM Editorial.