Challenges and solutions: Criticality of nutrition for infants with cleft

Creating awareness and capacity building of healthcare providers in counselling mothers and ensuring correct feeding practices at the institutional level are integral to definitive cleft care.

Published - September 21, 2023 08:04 pm IST - Chennai

The nutritional needs of children born with treatable birth defects such as cleft lip and palate, who need specialised care, remain in the shadows. Image for representational purpose only.

The nutritional needs of children born with treatable birth defects such as cleft lip and palate, who need specialised care, remain in the shadows. Image for representational purpose only. | Photo Credit: The Hindu

The first 1000 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 life-long benefits for physical growth, intelligence, and emotional health. Optimal nutrition includes exclusive breastfeeding for the first six months of life; and the introduction of nutritionally adequate and safe complementary (solid) foods at six months, together with continued breastfeeding up to two years or beyond.

A number of studies have established the association between good infant nutrition and long-term protection against chronic diseases, as well as optimal physical and cognitive development of a child. Thanks to public health awareness efforts, breastfeeding finds increased practice at the household level: exclusive breastfeeding rate among children under six months has improved from 55 % in 2015-16 (NFHS 4) to 64 % in 2019-21 (NFHS 5). 

While the Indian government’s initiative to deliver on Suposhit Bharat (or well-nourished India) marks the criticality of meeting nutritional needs in the growing nation, the nutritional needs of children born with treatable birth defects such as cleft lip and palate, who need specialised care, still remain in the shadow. In India, one in 700 children is born with a cleft annually, this translates to more than 35,000 live cleft births in the country. Most of these children need special feeding techniques to ensure adequate nutritional intake to survive, undergo the timely surgery, and thrive in life.

In 2020, a survey (from Smile Train) conducted among 90 partner hospitals in India revealed that 47% of medical practitioners identified patients’ poor patient health as a significant obstacle to providing timely surgical care for children with a cleft. Additionally, 100% surveyed practitioners highlighted malnutrition as a reason for additional patient care and delayed surgery.

Every year, as the nation observes National Nutrition Month I am reminded of Meera, a little girl from a village in Telangana. She was born with a good birth weight of three kgs and a cleft lip and palate. Meera’s parents had no idea about clefts and had no information about its treatment. Her mother, Renuka, would cry every time she tried to breastfeed her daughter as Meera was unable to latch on because of her cleft and milk used to run out through her nose. When I met Meera, she was 3 months old and weighed only 3.5 kgs. She was severely malnourished, and her parents were waiting for a miracle to happen for their child. I remember counselling the mother, her lactation was quite good but because of the cleft, the baby was unable to generate sufficient negative pressure. I showed her how to hold the baby while attempting breastfeeding and shared tips that would help Meera latch better. My team counselled the mother on 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 long career, I have counselled many mothers who struggle to feed their children with clefts. Mothers of children with clefts encounter challenges when attempting to breastfeed their babies due to the anatomical differences caused by the cleft. A cleft condition can make latching onto the breast and creating a proper seal for sucking difficult for the baby, leading to ineffective energy utilisation, poor intake, and poor weight gain. Malnutrition among children with clefts increases the risks for infections which further compromise weight gain and delay the life-transforming cleft surgery process. Such mothers need training and often step-by-step instructions to ensure best practices while breastfeeding. 

While the country looks forward to a national guideline on feeding practices for children with cleft, some healthcare centres are already successfully running nutrition programs across the country. Smile Train has introduced a 3-tier strategy to improve the nutritional outcome in a child - nutrition assessment for children with cleft, feeding counselling for mothers and families on all aspects including the protective benefits of breastfeeding, and nutrition support before and after surgery.

Creating awareness and capacity building of healthcare providers in counselling mothers with cleft-affected children and ensuring correct feeding practices at the institutional level are an important part of definitive cleft care. Healthcare providers must promote the concept of early skin-to-skin contact and provide support to the mothers for initiating and maintaining breastfeeding. Regular evaluation of the infant’s sucking and swallowing abilities and one-to-one coaching for mothers on breastfeeding including correct positioning and attachment to make both mother and infant comfortable, is a must. Timely management of common breastfeeding difficulties such as cracked nipples, breast engorgement, and low milk supply is essential. Feeding-related intervention should start immediately after the birth of the child and healthcare providers need to instill a sense of confidence in the mother with counselling and awareness building.  

As the baby grows, introducing a balanced diet that includes a variety of foods rich in vitamins, minerals, and protein is crucial for continued healthy development. Mothers need to be educated on what to feed, and how to feed the child to ensure optimal physical growth and cognitive development in the child. With a focus on empowering parents and families with contextual, timely, and actionable support, it is possible to break the cycle of malnutrition, ensure timely corrective surgery, and enhance the quality of life of children with clefts.

(Views expressed here are personal. Padmasani Venkat Ramanan is nutrition advisor for Smile Train India and a paediatrician based in Chennai. padmasani2001@yahoo.com)

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