Children under the age of five with clefts in India are one and a half times more vulnerable to severe malnutrition

The birth of a daughter was a dream come true for Meena Sharma. Although she looked a little different, Meena thought her baby was the most beautiful child she had ever seen. However, her happiness was to be short lived. Instead of celebrating the birth, close family members turned their backs on her and blamed Meena for giving birth to a baby whose lips were unjoined.

A shocked Meena spent the next few days in a daze. It was only when she got to know that the cleft, or the gap in her daughter’s lip, was treatable that she emerged from her depression. Realising that early treatment was critical for cleft-lip patients, she and her husband reached out for medical help.

Fortunately, they were able to afford the surgeries and the related comprehensive care required to correct the condition. But a majority of the 35,000 children born with a cleft lip and palate in India every year are not so lucky. According to a report released in October 2022, children under the age of five with clefts in India are one and a half times more vulnerable to severe malnutrition compared to under-five children without clefts. This is because the unjoined lips make breastfeeding the infant almost impossible and difficulties in swallowing further hampers their nutrition.

This study carried out by the Institute for Health Metrics and Evaluation (IHME) at the University of Washington’s School of Medicine in conjunction with Smile Train, a not-for-profit working to help children born with cleft lip and palate, also found that children who are born underweight and with clefts, face a higher risk of under-nutrition and other potentially life-threatening conditions compared to children who are only underweight.

This is bad news, especially for marginalised communities in a country that has slipped six places down to 107 out of 121 countries in the Global Hunger Index published last month. Limited food security is a major reason for 35 per cent of children in the country being stunted (low height for age) and wasting (low weight for height) of 19 per cent children (Fifth National Family Health Survey 2019-21).Worryingly, there has been a worsening in food security both in quantity and quality compared to the pre-Covid period for many according to the Hunger Watch surveys conducted by the Right to Food campaign. What makes it even more disheartening is that if timely access to adequate nutrition (and surgical treatment) is given, up to a third of the estimated cleft-lip and palate-related malnutrition deaths in children under five in the country can be prevented.

Unfortunately, awareness on this issue remains low not just among parents but also caregivers and health professionals. Many women who give birth to babies with cleft lip or palate do not seek treatment because they believe that it is God’s wish that their children were born to look different. Some consider it as punishment for their past sins. Another belief among families is that the pregnant woman must have stepped out during a solar eclipse and brought this upon her child.

So are any of these beliefs and superstitions true? Why does cleft lip and cleft palate occur? Doctors say a combination of nutritional and genetic factors cause an improper joining of facial tissues during the development of the foetus in the mother’s womb. Smoking or drinking alcohol, poor nutrition and emotional stress and trauma experienced during pregnancy increase the risk of its occurrence.

For poor and marginalised women, this is inextricably linked to their poor nutritional status. It is also believed that early marriage of adolescent girls could enhance the chances of cleft lip occurrence as their bodies are not prepared for motherhood, which could be multiple in many cases.

In a society where physical beauty is paramount, it is not just the mothers who face social ostracism for giving birth to infants with clefts. The children have to deal with stigma and derision for speech impairment in addition to difficulties in eating, breathing and hearing. This is where Smile Train India is making a difference. The not-for-profit provides not just free reconstructive surgeries for children but also makes investments to improve the nutritional outcomes of children with clefts.

According to Mamta Carrol, Smile Train senior vice-president and Asia regional director, in addition to providing the necessary surgical procedures, they also ensure a range of non-surgical care like speech therapy, nutrition counseling, psycho-social support, and orthodontic treatment starting from birth of the child and continuing till adulthood.

In the last two decades, Smile Train has performed nearly 650,000 surgeries with 150 partner hospitals in 110 cities across India by empowering local medical professionals with training, funding, and resources to provide free cleft surgery and comprehensive cleft care to children.

Experts say that there is a huge backlog of cleft treatment in India—about 1 million untreated patients. This is why early intervention is critical. Doctors say 81 per cent of cleft lips can be diagnosed by an ultrasound during the early stages of the pregnancy. The best age for primary cleft lip surgery is between the ages of three to six months and nine to 18 months for cleft palate surgery. Delays in cleft surgery can lead to speech difficulties, hearing loss and occlusion issues, and decreased quality of life, says Carrol.

This is why they have partnered with the Federation of Obstetric and Gynaecological Societies of India (FOGSI), to reach out to pregnant mothers and families to prepare and guide them.

It has introduced the country’s first and only toll-free cleft helpline in partnership with GlaxoSmithKline Asia Private Limited, where cleft patients and parents of cleft affected children can call from any part of India and get advice, assistance, and access to surgery free of cost.

A life changing initiative is the institution of the Cleft India Parents Association (CIPA). Started by some of the parents of children with cleft lip and palate, CIPA provides support to new parents by sharing their own experiences and extending emotional support. They also provide information to facilitate better management of their children’s cleft journey which spans approximately 20 years.

In 2019, when a newborn with bilateral cleft lip and palate born at the government hospital in Gurgaon, Haryana, was abandoned by his parents a few hours after his birth, CIPA came to his rescue. After reading about his plight in the newspaper, they coordinated with doctors and nurses at the hospital to ensure he received the specialised attention required. After police efforts to locate his parents failed, they collaborated with the government’s childcare committee to place the baby at a Smile Train centre for management of his cleft lip and palate.

Studies show that the number of children born with clefts in India has failed to decline significantly over the last 20 years. Greater awareness and targeted interventions are needed to address this issue.

Also important is to include cleft lip on the list of disabilities in the amendment of the Rights of Persons with Disabilities Act, 2016, so that children with clefts are given equal opportunities to not just survive and thrive, but also to attain their true potential without discrimination and prejudice.

(The author is a journalist writing on development and gender. The views expressed are personal)