The nutritional needs of children born with treatable birth defects such as cleft lip and palate, who need specialized care, remain in the shadows. Image for representational purposes only. | Photo credit: The Hindu
The first 1,000 days of life – from conception to two years of age – is a critical period for physical growth and brain development. Good nutrition during this period has lifelong benefits for physical growth, intelligence and emotional health. Optimal nutrition includes exclusive breastfeeding for the first six months of life; and introduction of nutritionally adequate and safe complementary (solid) foods at six months along with continued breastfeeding for up to two years or more.
A number of studies have shown a link between good infant nutrition and long-term protection against chronic diseases, as well as optimal physical and cognitive development of the child. Thanks to public health awareness efforts, breastfeeding is increasing at the household level: exclusive breastfeeding rates for children under six months improved from 55% in 2015–16 (NFHS 4) to 64% in 2019–21 (NFHS 5).
While the Government of India’s initiative to fulfill Supposedly India (or well fed India) indicates the criticality of meeting nutritional needs in a growing country, the nutritional needs of children born with treatable birth defects such as cleft lip and palate, who need specialized care, still remain in the shadows. In India, one in 700 babies are born with clefts every year, which translates to more than 35,000 live births with clefts in the country. Most of these children require special feeding techniques to ensure adequate nutrient intake to survive, undergo early surgery and thrive in life.
In 2020, a survey (by Smile Train) of 90 partner hospitals in India revealed that 47% of doctors identified poor patient health as a significant barrier to providing timely surgical care to children with clefts. In addition, 100% of physicians surveyed highlighted malnutrition as a reason for additional patient care and delayed surgery.
Every year when the nation celebrates National Nutrition Month, I remember Meera, a little girl from a village in Telangana. She was born with a good birth weight of three kg and a cleft lip and palate. Meera’s parents had no idea about the clefts and no information about his treatment. Her mother Renuka cried every time she tried to breastfeed her daughter as Meera was unable to latch due to the cleft and milk was leaking through her nose. When I met Meera, she was 3 months old and weighed only 3.5 kg. She was severely malnourished and her parents expected a miracle to happen for their child. I remember advising the mother, her lactation was quite good, but because of the cleft, the baby was not able to create enough negative pressure. I showed her how to hold the baby while trying to breastfeed and shared tips to help Meera latch on better. My team advised the mother how to express breast milk and feed it with a spoon or Paladai. Within two months, Meera gained weight and underwent her first cleft surgery.
In my three-decade career, I have counseled many mothers struggling to support their cleft children. Mothers of children with clefts face challenges when trying to breastfeed their babies due to the anatomical differences caused by the cleft. A cleft can make it difficult for a baby to latch onto the breast and form a proper seal for sucking, leading to inefficient energy use, poor intake and poor weight gain. Malnutrition in children with clefts increases the risk of infections, further impairing weight gain and delaying life-transforming cleft surgery. Such mothers need training and often step-by-step guidance to ensure good breastfeeding practices.
While the country looks forward to a national guideline on dietary practices for children with clefts, some health centers are already successfully running nutrition programs across the country. Smile Train implemented a 3-step strategy to improve the nutritional outcome of the child – nutritional assessment of children with clefts, nutritional counseling for mothers and families in all aspects including the protective benefits of breastfeeding and nutritional support before and after surgery.
An important part of definitive cleft care is creating awareness and building the capacity of health care providers in the area of counseling mothers with cleft children and ensuring proper dietary practices at the institutional level. Health care providers must promote the concept of early skin-to-skin contact and support mothers in initiating and maintaining breastfeeding. Regular assessment of the infant’s sucking and swallowing abilities and individual coaching of mothers regarding breastfeeding, including correct positioning and latching, are essential so that both mother and child feel comfortable. Early treatment of common breastfeeding problems such as cracked nipples, breast engorgement and low milk supply is essential. Feeding interventions should start immediately after the baby is born, and health care providers need to instill a sense of confidence in the mother through counseling and awareness building.
As a child grows, introducing a balanced diet that includes a variety of foods rich in vitamins, minerals and protein is essential for continued healthy development. Mothers must be educated about what to feed and how to feed the baby to ensure optimal physical growth and cognitive development of the baby. By focusing on empowering parents and families through contextual, timely and actionable support, it is possible to break the cycle of malnutrition, ensure timely corrective surgery and improve the quality of life of children with clefts.
(Views expressed here are personal. Padmasani Venkat Ramanan is a nutrition consultant for Smile Train India and a pediatrician based in Chennai. email@example.com)
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