As our director of nutrition, Charlotte Steppling has seen first-hand how lacking proper knowledge and guidance on nutrition can have a devastating impact.
Years ago, while aiding patient recruitment efforts for Operation Smile medical programmes, Charlotte came to a startling realisation.
“We were turning away patients suffering from malnutrition,” she said. “I was waiting to see these kids show up at the next programme, but they just weren’t coming back. They were dying, and it broke my heart.”
Children born with cleft conditions often face major challenges with feeding and receiving proper nourishment during the critical months after they’re born. These factors can lead to malnutrition, delays in growth and development and sometimes even death.
“What if we had come in contact with them earlier or what if we had a strong programme through Operation Smile Madagascar a year prior?” Charlotte often asked herself.
Operation Smile knew that in order to uphold its promise of delivering high-quality, safe surgical care to as many patients as possible, nutrition needed to become a priority.
Due to the compassionate individuals like Charlotte who’re devoted to helping bring nutritional support to the forefront, specialized programmes have been established in 24 countries including Madagascar, India, Ghana and Guatemala, where more patients’ lives are being saved through timely intervention and dietary education.
“We need to reach these patients as early as possible,” she said. “Whenever a patient is born with cleft, they should know that Operation Smile exists.”
We recently spoke with Charlotte to learn more about the future of Operation Smile nutrition programmes as well as why it’s crucial for children living with cleft to be well-nourished before they can receive surgery.
Q: Charlotte, can you tell us a little bit more about how you found yourself in this role as Operation Smile’s nutrition programme manager?
A: “I arrived in Madagascar in 2013 to serve as a Peace Corps volunteer. In the village where I lived, I came across numerous children and adults living with untreated cleft lip and cleft palate. I realized there were numerous barriers to care including the lack of knowledge of and access to medical care. They were unaware of the opportunity to receive care and the potential to be evaluated by a medical team with the hopes of receiving free surgery. The idea was unfathomable to them: ‘Free surgery? Free care?’ As I explained to the potential patients, I spoke about Operation Smile and gained their trust, we traveled to the capital city, Antananarivo, and met the Operation Smile team.
“After three years of service with the Peace Corps and throughout three years spent recruiting more than 70 patients from a remote village in Madagascar, the local foundation offered me an opportunity to join their team. I was based in Antsirabe, a central highlands city and worked at the local hospital Operation Smile had partnered with.
“Here in Madagascar, there’s less than one physician – 0.18 actually – for every 1,000 people, which makes access to health care challenging. Nutritionists are a rarity. Antsirabe is located in a region that has a stunning rate of malnutrition at 65%, the highest rate in Madagascar. Interestingly, this region is also a prominent agriculture hub and the main producer of vegetables and cattle.
“It’s hard to make a child gain weight, and it’s really challenging when you are dealing with a ton of different variables. I believe increasing knowledge around nutrition, around the first 1,000 days of life, around healthy habits and adopting a hygienic environment, is essential.”
“This motivation to make change, to make a difference in the lives of the most vulnerable, propelled me to open a nonprofit to fundraise a nutrition center in Antsirabe. We opened this nutrition center (unaffiliated with Operation Smile) in 2017 and offered care to patients living with cleft conditions and those living without them. I could not stand to not make a difference. I could not sit back and not act.
“At Operation Smile in Madagascar, we decided to build a nutrition programme to cater to patients suffering from malnutrition. The program paralleled the medical programme timeline, and we asked patients who were assessed as malnourished to stay at the patient village for a couple days.
“We built a program based on education around breastfeeding, the promotion of healthy foods and nutrition, and the importance of water, sanitation and hygiene. We used in action activities to teach and empower families on how to adopt healthy behaviors that could make a lasting change in the lives of their children. We provided our patients and their families with donations of ready-to-use-therapeutic food (RUTF) and breast milk substitutes.
“Through follow ups, we noticed weight gain. Through interviews, we identified changes in the behavior of caregivers. We were thrilled to see patients that were following the nutrition programmes were coming back for medical screening and cleared for surgery. I fully believe that, currently seeing the status of the world, we have the due diligence and the need to intervene on a nutritional level as an organisation.”
Q: Tell us why adequate nutrition is so critical for children who are born with cleft conditions?
A: “To receive surgery, you need to be at a healthy nutritional status. At Operation Smile, we have very high standards around who is cleared for surgery. All of our patients are candidates but being cleared for surgery is a very different topic. You have a lot of parents who are feeding them whatever they can, whether that’s watered-down rice water, condensed milk mixed with water or some type of porridge or stew.
“Then you have babies who’re having challenges latching or mothers who are having challenges breastfeeding. That’s where Operation Smile is focusing on prioritizing mother’s milk as the first intervention. Mother’s milk is free and full of nutrients, so if we can somehow get mother’s milk to the baby, then that is the best option.
“Then you have babies who are essentially dealing with malnutrition because, a lot of times, the parents aren’t aware of nutritional diversification and food diversification. So, we teach them about food that’s accessible, available and affordable to the patient’s family.
“We work with communities through our local teams to figure out what is available, then think about innovative ways to include high-protein density foods and provide a balanced diet so that patients are well-fed and well-nourished. The patients’ caregivers are also well-educated and feel empowered that they can provide for their children.”
Q: Is there a moment or a specific patient who really illustrates why you’re passionate about this?
A: “There was a patient with a bilateral cleft lip and cleft palate. He was maybe 4 months old when he first came to our programme. I had met his mother, and she was doing everything she could for her little boy. She was having challenges breastfeeding him because she was no longer producing milk and during the early months didn’t have the opportunity to receive counseling on relactation techniques. The baby was very hungry.
“At that time, I had opened up the nutrition center, and she was one of its first members. Her son was part of the programme, and he was receiving RUTF through Operation Smile and breast milk substitutes as well. His mom also received meals, because it was apparent that she was having difficulties feeding herself.
“Then one day, he wasn’t feeling good. We brought him to the hospital in Antsirabe, and he was put in the paediatric ward, monitored over two days. His system just let go, and he didn’t make it.
“I oftentimes keep him and his mum in my thoughts when I design programs. What if we had come in contact with them earlier? What if we had a strong program a year prior to him being born? He could have come into the program, and we could have intervened earlier and made a difference in his life. I never want another mum to feel that way or deal with the death of a child due to malnutrition when that’s something we can help with.”
Q: What’s happening right now with regard to nutrition programming that you’re most excited about?
A: “It’s an exciting time for nutrition and Operation Smile’s comprehensive care programs. Currently, our team is working on building a resource library for our program countries to feel more supported when it comes to building and designing nutrition programs. We’re also creating a curriculum for training, having a credentialing pathway for nutrition volunteers and building training sessions for community health workers and caregivers. Working closely with our local teams, we’re striving to ensure that the information is country- and culture-specific based on what food groups are available and what recommendations they would like to make about nutrition and feeding.
“We’re also finalising a comprehensive nutritional assessment that will assess the nutritional status of a patient suffering from malnutrition and building a platform to track their progress. This assessment will allow the nutritionist in country or nutrition volunteer to properly provide the necessary prescription of care for the patient.”
Q: Could you tell us a little bit more about your vision for the future? What are the main challenges in light of the pandemic? What’s the potential that we can see through these programmes?
A: “With the current pandemic, we are looking into innovative ways to run our programmes virtually. In countries where our patients live in extremely remote locations with no access to electricity, we are finding solutions on how to reach patients as early as possible. In Madagascar, we use patient advocates. We to train community members to deliver messages around nutrition and feeding, water, sanitation and hygiene to get as close as we can to the patient in a trusted manner.
“When I look at a long-term vision for nutrition programs for Operation Smile, I believe nutrition interventions and activities are going to take a forefront for a lot of our countries. COVID-19 has had a significant impact on childhood malnutrition and nutrition-related mortality. It’s had a detrimental impact on the general population, but the effect it’s having on people affected by cleft, who already have challenges feeding, is even more substantial.
“We need to act now. This is our time as an organisation to step in and make a change in the lives of our patients, in some ways saving their lives, providing them hope, and supporting them in these extremely difficult times.”