The Unprecedented Complexity of Malnutrition, COVID-19, and Orofacial Cleft Care in Low- and Middle-Income Countries: An Opportunity for Change

It does not need to be said that COVID-19 changed the world and that those changes – big and small, immediate and delayed, obvious and subtle – have redefined the field of global public health. Global surgery, which Dr. Paul Farmer referred to as the “neglected stepchild of global public health,”¹ has been equally affected and although those changes may be less apparent, they are no less staggering.  Prior to the pandemic, it was estimated that five billion people lacked access to safe, affordable surgical care with the majority residing in low- and- middle- income countries (LMICs).^2,3  During the early months of the pandemic, the need for ventilators, medical supplies, and staffing led to an inevitable delay in emergent surgery and an almost complete stop for elective procedures in high-income and LMIC’s alike.⁴ The already limited surgical capacity in LMICs was further strained as countries continued to fight COVID-19 and surgical resource shortages worsened ^4,5,6  On top of the disruption to national surgical systems globally, humanitarian organizations, which are believed to provide upwards of 250,000 surgical procedures every year, were halted.^5,7,8

With the pause on national and NGO elective surgical services, patients in LMICs access to specialized surgical care, such as orofacial cleft (OFC) surgery, was negligible. At baseline, these services are limited in LMICs due to barriers in accessing, delivering, or financing these procedures. OFCs are characterized as an embryologic failure of fusion of facial elements that normally develop into the lip, palate, or both (ICD10 35-37).⁹  They are among the most common congenital birth defects globally with an estimated global incidence of over 1 in 1,000 live births correlating to approximately 9.1 individuals living with OFCs in LMICs.¹⁰ The incidence of OFCs ranges widely by ethnicity^10-15, however, even where incidence is relatively low, lack of access to care often means the prevalence of unrepaired OFCs remains high.^10,13,14  As surgical systems and NGOs begin to address the additional surgical burden created over the past two years, the delay in care for patients with OFCs is beginning to show its dire consequences through the most prevalent of these complications- malnutrition.

The increasing prevalence of OFCs, in the context of COVID-19, and rising rates of global malnutrition creates a complex problem. In the absence of a global pandemic, malnutrition disproportionately affects children with OFCs. The prevalence of malnutrition in pediatric patients with OFCs is 30-50% globally – far higher than the prevalence in healthy children.^16-18 This difference is mainly attributed to feeding difficulties in very young children.¹⁹ Although methods for assisted feeding, such as squeezable bottles and modified nipples, are recommended, these options are often unavailable in LMICs. Additionally, in LMICs, limited access to comprehensive medical services and clean water sources contribute to a lack of caregiver resources, knowledge, training, and supplies necessary to ensure special nutritional needs are met. ^20,21,22,23 Even when patients with OFCs can reach medical care, malnutrition may leave them ineligible for surgery, or worse, lead to a postsurgical complication, such as an infection.

Although OFC surgery may not appear “emergent”, delaying surgical interventions can translate into an increased risk of mortality as well as significant morbidities. Delays in definitive care lead to increased rates of tooth decay, higher incidences of misarticulation, worse overall speech outcomes, poor social integration, and increased rates of depression. negative psychosocial effects, and dental problems- in addition to further exacerbating malnutrition due to feeding issues.^24-27  Headey et al. predicted during the early stages of the pandemic that there could be a 14.3% increase in moderate or severe wasting of children under 5. ²⁸   We expect this proportion to be higher for patients with OFCs due to feeding difficulties not be mitigated by surgery. Additionally, current economic difficulties, increased instances of severe weather events, and growing levels of food insecurity have plagued LMICs throughout the COVID-19 pandemic, making it highly likely that nutritional interventions will only become more important and imperative in the livelihood of patients with OFCs in both the short and long term.

While surgery remains limited, an unknown proportion of patients are living with sustained malnutrition due to unrepaired OFCs. If the prevalence of both patients with OFC and malnourishment continue to rise, less patients will be eligible for surgery, even if available, and will lead patients with OFC to be subject to the negative consequences of delayed intervention. Nutrition needs to be at the forefront of OFC treatment across LMICs- something that may or may not have been considered as a critical component of care in the past.  At Operation Smile (OS), an international nonprofit specializing in OFC care, nutrition was a peripheral part of our programmatic activity prior to the COVID-19 pandemic. However, as many of our daily operations came to a screeching halt along with the rest of the world in March 2020, the nutritional needs of patients with OFCs simultaneously became increasingly apparent. In the past year and a half, the need to increase our nutrition-based programming became overwhelming. Not only because it is feasible when many of our surgical programs were impossible, but because our LMIC-based colleagues communicated that the nutrition of our patients was declining as surgery continued to be delayed.

So, what now? In the case of OS, we have reframed nutrition as a critical component on the pathway to surgery for a large proportion of young patients with OFCs. Nutrition is now an integral pillar of our program strategy. During the past year, we have worked with a diverse group of stakeholders including ministries of health, in-country programmatic teams, and international medical providers to ensure that current and future investments prioritize sustainability, quality, and strategic implementation of nutrition programs in LMICs.

As OS works in a diverse set of LMICs, the delivery of nutritional interventions is tailored to each country’s specific needs. However, the goal of each is the same: to support our patients and their families through improving patient health, nutrition, and enhancing the possibility of safe and timely surgery. After extensive input from internal and external collaborators, we have prioritized working with our in-country teams to implement nutrition programs consisting of six main components:

1. Collaborating with other local, nutrition focused non-governmental organizations (NGOs) in the communities we serve
2. Empowering local community health volunteers, midwives, and professional health care workers through education initiatives
3. Promoting social behavior change for patient families and care givers through education including: breastfeeding techniques, water, sanitation and hygiene, and healthy habits to improve our patients’ home life and environment
4. Connecting with local sponsors and global donors to bring innovative feeding and nutrition products to our most vulnerable populations
5. Providing nutrition assessments to evaluate the nutritional status and determine the prescription of care for each patient
6. Partnering with government entities to obtain strategic advocacy and sustain political commitment to nutrition as a national policy priority

We have scaled our nutrition-based programing from operating in only six countries at the end of 2019, to now 28 countries as of January 2022. This programming includes a variety of context- appropriate solutions based on the six components above and has directly reached over 8,000 patients with OFC during the pandemic.

A specific example of how the organization is working towards these goals is the development of a robust and comprehensive nutrition assessment to meet patient needs. This global tool helps to identify patients with OFC who are experiencing or are at risk of experiencing malnutrition. It also determines what nutrition education and/or therapies are needed to improve nutritional status in advance of surgery. Finally, this assessment helps to track if the nutrition therapies prescribed effectively promote growth and improved nutritional status via routine follow-up monitoring.

In addition to our investment in early identification and comprehensive nutrition assessments, we have focused our efforts on education to promote social behavior change. In several countries, OS provides educational workshops on water, sanitation, and hygiene (WASH), highlighting the health benefits associated with a hygienic environment and practices. During the workshop, patients and their families receive instructions on hygiene best practices and wash kits with essential items, including two 2-liter buckets, toothbrush and toothpaste, masks, hand sanitizer, soap, and chlorine tablets or liquid for cleaning vegetables and fruit.

The challenges in the transition to prioritizing nutrition programming over the last two years has provided valuable insight allowing room for iteration and improvement. Once initiatives were designed, it quickly became apparent that a lack of local staff and trained medical volunteers, made it challenging to rapidly scale our comprehensive programming. With this realization, OS has shifted an increased amount of funding allocation towards the employment and training of local staff to deploy programs.  Secondly, navigating the wide array of cultural differences within the countries we serve forced us to take a step back and build a programmatic model that can be adapted to a variety of contexts. Ensuring that educational materials were accessible, appropriate, and relatable for each country’s context became a primary goal and deliverable. Finally, the acquisition of adequate nutrition supplies, cleft feeding bottles, and easy to use/ clean breast pumps created a complex challenge in the field; further magnified by the global supply chain issues and shortages the global economy is currently facing. Our in-country teams were able to identify bottlenecks and establish new vendor relationships with global distributors and local manufacturers to ensure each country had sufficient supplies for the patients they provide care.

Patients with OFCs are a prime example of a patient population that continues to experience indirect adverse health effects because of the COVID-19 pandemic. Delayed surgery, increased malnutrition globally, and the inability of international NGOs to conduct short-term surgical programing has created a necessity for Operation Smile to be innovative in the expansion of comprehensive care for our patients.  Through our global networks and driving program development through local leadership we are better prepared as we lift our heads from the COVID-19 pandemic. The global health community needs to stay alert and ensure that all patients – not just those directly affected by COVID – are being incorporated into “post” pandemic planning.