Awareness needed to tackle the problem of cleft lip

Children under 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, his happiness will 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 not joined.

A shocked Meena spent the next few days in a daze. It wasn’t until she learned that the cleft, or space in her daughter’s lip, was treatable that she snapped out of her depression. Realizing that early treatment was essential for cleft lip patients, she and her husband sought medical help.

Fortunately, they were able to pay for the surgeries and related comprehensive care needed to correct the condition. But the majority of the 35,000 children born with cleft lip and palate in India each year are not so lucky. According to a report published in October 2022, children under five with clefts in India are one and a half times more vulnerable to severe malnutrition than children under five without clefts. This is because unattached lips make breastfeeding an infant nearly impossible and difficulty swallowing further hinders its nutrition.

This study conducted by the Institute for Health Metrics and Evaluation (IHME) at the University of Washington School of Medicine in conjunction with Smile Train, a nonprofit organization that helps children born with cleft lip and palate, also revealed that infants born underweight and with clefts are at higher risk of undernutrition and other life-threatening conditions compared to infants who are only underweight.

That’s bad news, especially for marginalized communities in a country that fell six places to 107th out of 121 countries in the Global Hunger Index released last month. Limited food security is one of the main reasons why 35% of children in the country are stunted (low height for age) and wasted (low weight for height) in 19% of children (Fifth Survey National Family Health Report 2019-21). there has been a deterioration in food security both in quantity and quality compared to the pre-Covid period for many according to Hunger Watch surveys conducted by the Right to Food campaign. What makes it even more discouraging is that if prompt access to adequate nutrition (and surgical treatment) is given, up to one-third of estimated deaths from cleft lip and palate-related malnutrition in children under five in the country can be prevented.

Unfortunately, awareness of this issue remains low not only among parents, but also among caregivers and healthcare professionals. Many women who give birth to babies with a cleft lip or palate do not seek treatment because they believe it is God’s will that their children be born looking different. Some see it as a punishment for their past sins. Another belief among families is that the pregnant woman must have come out during a solar eclipse and brought it to her child.

So, are any of these beliefs and superstitions true? Why do cleft lip and cleft palate occur? Doctors say that a combination of nutritional and genetic factors causes facial tissues to join together incorrectly during fetal development in the womb. Smoking or drinking alcohol, poor diet, and the emotional stress and trauma experienced during pregnancy increase the risk of its occurrence.

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

In a society where physical beauty is paramount, it’s not just mothers who face social ostracism for giving birth to babies with clefts. Children face stigma and derision for speech disorders in addition to eating, breathing and hearing difficulties. This is where Smile Train India makes the difference. The nonprofit organization not only provides free reconstructive surgeries for children, but also invests to improve nutritional outcomes for children with clefts.

According to Mamta Carrol, Senior Vice President of Smile Train and Regional Director for Asia, in addition to providing the necessary surgical procedures, they also provide a range of non-surgical care such as speech therapy, nutritional counseling, psychosocial support and orthodontic treatment. from the birth of the child until adulthood.

Over the past 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 the training, funding and resources to provide surgery free slit and full slit care for children.

Experts say there is a huge backlog of cleft treatment in India – around 1 million untreated patients. This is why early intervention is essential. Doctors say 81% of cleft lips can be diagnosed with an ultrasound early in pregnancy. The best age for primary cleft lip surgery is between three and six months and between nine and 18 months for cleft palate surgery. Delays in cleft surgery can lead to speech difficulties, hearing loss and occlusion issues, as well as a decreased quality of life, says Carrol.

This is why they have partnered with the Federation of Obstetrics and Gynecology Societies of India (FOGSI) to reach out to pregnant women and families to prepare and guide them.

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

One life-changing initiative is the institution of Cleft India Parents Association (CIPA). Started by some parents of children with cleft lip and palate, CIPA supports new parents by sharing their own experiences and providing emotional support. They also provide information to facilitate better management of their children’s lunge 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 within hours of birth, CIPA came to his rescue. After reading about his fate in the newspaper, they coordinated with doctors and nurses at the hospital to ensure he received the specialist attention required. After police efforts to locate her parents failed, they worked with the government’s child care committee to place the baby in a Smile Train center for management of her cleft lip and palate.

Studies show that the number of children born with clefts in India has not decreased significantly over the past 20 years. Greater awareness and targeted interventions are needed to address this issue.

It is also important to include cleft lip on the list of disabilities in the Disability Rights Amendment Act 2016, so that children with cleft lip have an equal chance not only to survive and thrive. flourish, but also to reach their true potential without discrimination and prejudice.

(The author is a journalist who writes about development and gender. Opinions expressed are personal)

Christine E. Phillips