Malnutrition Among Cleft Patients: A Neglected Burden in Low and Middle-Income Countries
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A woman feeds her new born baby Credit: PeopleImages, South Africa
In global health, stories of survival and resilience are often birthed in the distant corners of the world, where access to essential health services remains an unattainable dream for many. Some stories begin where life itself takes its first delicate steps. In the first 4 - 10 weeks of pregnancy, an incomplete formation of a baby’s orofacial structures results in cleft lip and/or palate (CLP). CLP is the most common orofacial birth defect globally, occurring at a prevalence rate of 1 in 700 births. This makes them the second most common birth defect after clubfoot. While the exact causes of cleft are yet to be determined, research has shown causal links to genetics and environmental factors.
In the earliest days of life, infants with CLP face a daunting obstacle: feeding. This simple, instinctual act of nourishment becomes a battle, as the presence of a cleft disrupts the proper seal-suck-swallow process required for breast and conventional bottle-feeding. This leads to low caloric intake, swallowing of air, and interrupted feeding. These subsequently lead to insufficient weight gain and, if not tended to early, full-blown malnutrition.
Understanding the Burden
An analysis of primary cleft operations conducted in low- and middle-income countries (LMICs) found that 28.6% of children with clefts were underweight at the time of primary surgery. As concerning as this figure is, it does not reflect the full extent of the burden as it only represents those who have been reached through awareness efforts, those who have survived the harsh complications of living with a cleft, and those who believe that there is a treatment for it. Of further concern in LMICs is that while they host a significant burden of CLP cases, they paradoxically lack the resources, policies and research needed to meet their CLP treatment needs.
Studies indicate that children born with CLP should get a repair surgery done within the first two years of life to mitigate complications such as eating, breathing, hearing, and speaking difficulties. Malnutrition, in particular, is critical as it is not only a complication of an untreated cleft but is also a severe bottleneck to timely surgical care as long-term rehabilitation interferes with the narrow, time-sensitive window of opportunity to operate. From the general pediatric population, those under the age of five are most at risk for malnutrition, with those under two years old particularly impacted. As child malnutrition continues to wreak public health havoc in LMICs, this reality is significantly worsened for those with clefts.
The evidence further shows that there is generally a low level of knowledge on improvised feeding for cleft patients among caregivers. Understanding and adapting feeding instructions depends on caregivers’ level of education, acceptance of the defect, and willingness to implement advice. On the other hand, access to health facilities with trained feeding assistance providers and the availability and affordability of complementary milk and special feeding bottles also determine the presence and extent of malnutrition in CLP patients. In addition, complexities of psychosocial factors, such as inadequate care to affected children due to stigmatized isolation and inadequate social support, will often lead to malnutrition.
The Current Practice
In many LMICs, when cleft patients are found to have metrics that are anthropometrically and clinically unfit for surgery, they are moved to a nutritional rehabilitation program comprising counseling, feeding support, and scheduled follow-up on an outpatient basis. However, these programs unfortunately only exist in very few facilities supported by cleft-centered non-governmental organizations (NGOs).
In cases where severe malnutrition is diagnosed, the patient is referred to an in-patient facility where long-term rehabilitation is initiated and maintained until deemed fit for surgery. In such instances, rehabilitation can take several weeks, sometimes even months. Beyond the financial burden on patients and their families, this gravely impacts the bed occupation rate and patient turnover and can promote hospital management to make unsolicited interventions in forcing surgical intervention despite the apparent risks.
Way Forward
The stories born from cleft patients are not merely medical narratives - they are tales of survival that serve as reminders of the collective responsibility to ensure that no one is left behind in the pursuit of health for all. While there is a long way to go in addressing the malnutrition burden in cleft patients, the path toward mitigation can start by using existing nutrition frameworks.
Nutrition is a government-led and subsidized program in most, if not all, LMIC setups and is a priority program for most NGOs operating in these areas. As such, including a cleft nutrition program under a government package will bring much-needed attention to the dire need for advancing nutritional care for cleft patients.
By extension, such inclusion will further support the urgent need for initiatives on child and maternal health that will equip birth attendants, midwives, nutritionists, and other healthcare professionals with the necessary knowledge and skills to ensure early diagnosis of patients with cleft and prompt provision of feeding care, thereby effectively working towards preventing malnutrition.
It will further prompt relevant stakeholders to implement interventions that center unique partnerships to roll out designated nutrition units that use existing infrastructure and patient tracking systems to provide targeted, large-scale prevention and rehabilitation programs dedicated to cleft patients. As the ideal and sole purpose of these units would be nutritional rehabilitation of cleft patients, it would allow stricter, long-term follow-up, closely monitoring nutritional statuses to prevent malnutrition, and, in instances of malnutrition, ensuring uninterrupted rehabilitation. Additionally, including cleft nutrition in government programs will prompt the rollout of guidelines for cleft nutritional support to be implemented nationally, ensuring standardized protocols.
By embedding cleft nutrition initiatives within existing frameworks, not only can we achieve targeted and comprehensive care, but also lay the foundation for an inclusive and sustainable approach that embodies the essence of Health for All.
