Cleft lip and/or palate are common congenital defects that are not just physical but also cause deep-rooted mental and emotional trauma. Some experts say that globally 1 in every 700 babies is born with a cleft lip and/or palate.
Smile Train an international children’s charity is making a significant difference by supporting 100%-free cleft repair surgery and comprehensive cleft care for children globally. Their model empowers local medical professionals to provide cleft care in their own communities. Mamta Carroll, Senior Vice President and Regional Director, Asia, Smile Train and Dr. Krishnamurthy, Maxillofacial Surgeon, currently working as consultant and Project Director, Smile Train, Bangalore were the guests on The Navhind Times’ Talk from the Heart show that aired on the Goa 365 channel on Sunday, September 11.
“A cleft occurs when certain body parts and structures do not fuse together during foetal development. Clefts can involve the lip and/or the roof of the mouth (palate),” explained Krishnamurthy. The cause/s of cleft lip and/or palate is not very clear but most experts agree that the causes are multifactorial and may include a genetic predisposition, as well as environmental or nutritional factors. “One of the environmental factors that has been identified is the use of drugs. For example if a pregnant woman is having seizures, she is prescribed Phenytoin which can cause a genetic mutation and thereby cleft/palate. Smoking and excessive alcohol consumption are also attributed to this condition. In some cases spontaneous mutation too can occur. No one reason can be given and research is ongoing to better understand the condition,” added Krishnamurthy.
In India the prevalence of the condition is quite high given the population of the country. “Approximately 35000 children are born with this condition every year in India,” shared Carroll. Many children with clefts around the world live in isolation, but more importantly, have difficulty eating, breathing, and speaking. “When a baby has a cleft palate, the biggest problem is feeding the baby as the baby cannot suckle. Since breast milk is nutrition-packed and helps fight many diseases, the child is missing out on a precious resource,” explained Krishnamurthy.
Besides the physical trauma that the child goes through due to this condition, there is also a great deal of psycho-social distress. “Due to lack of awareness, the parents and family of a child with this condition do not know how to deal with it. Most of them believe it is due to karma and hence go through severe psychological and emotion suffering. There is also a lot of stigma attached to it,” said Carroll.
The solution to cleft lip and/or palate is surgery which is simple, takes approximately 45 minutes and the transformation is immediate however access to specialised healthcare can be a challenge. Also children born with clefts need more than just surgery. They may also need nutritional support, dental care, orthodontic treatment, and speech therapy. “The development of normal speech habits can be affected by cleft lip and/or palate since we use those body parts to form sounds. Cleft speech may be difficult to understand because of language delay, articulation and voice problems, hypernasality, nasal air emission and other similar issues,” said Krishnamurthy.
“Speech therapy helps the child achieve normal speech and communication for their age and developmental level,” said Carroll. She also spoke about the free, interactive speech services app with stories, games, and songs for children with clefts. “This fun app encourages children to practice more often from the comfort of their own home for better speech outcomes. It is available in English and Spanish for free in Google Play and Apple App Store,” she added.