Ensuring Healthier Lives Through Nutrition: Q&A with Charlotte Steppling

Operation Smile's nutrition programme manager Charlotte Steppling. Photo: Rohanna Mertens.

As our nutrition programme manager, 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 missions, 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 mission, 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, specialised 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.

Charlotte speaks to participants in the feeding programme at the patient shelter during a 2018 Operation Smile medical mission in Antsirabe. Patients who aren't chosen for surgery because they're underweight or malnourished are invited to join the feeding programme. For three days, parents and children attend educational workshops about hygiene, health and nutrition. Photo: Rohanna Mertens.

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 realised 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 travelled 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 healthcare 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.”

Children playing outside of the nutrition centre (unaffiliated with Operation Smile) Charlotte established to help patients and families overcome barriers to care. Photo: Zute Lightfoot.

“This motivation to make change, to make a difference in the lives of the most vulnerable, propelled me to open a non-profit to fundraise a nutrition centre in Antsirabe. We opened this nutrition centre (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 programme paralleled the medical mission timeline, and we asked patients who were assessed as malnourished to stay at the patient village for a couple days.

“We built a programme 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 behaviours 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 behaviour 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.”

At the patient shelter, participants in the feeding program listen as Charlotte talks about the importance to food diversification, nutrition and breastfeeding techniques. Photo: Rohanna Mertens.

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 prioritising 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.”

Charlotte watches as 12-year-old Frederic sees his mother, Celestine, for the first time after surgery. Photo: Zute Lightfoot.

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 medical mission. 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 counselling on relactation techniques. The baby was very hungry.

“At that time, I had opened up the nutrition centre, 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 mum 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 often keep him and his mum in my thoughts when I design programmes. What if we had come in contact with them earlier? What if we had a strong programme a year prior to him being born? He could have come into the programme, 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 programmes. Currently, our team is working on building a resource library for our programme countries to feel more supported when it comes to building and designing nutrition programmes. 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.”

Photo: Zute Lightfoot.

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 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 programmes 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.”

Photo: Rohanna Mertens.

From loneliness to acceptance

Justin, 53 years old. Photo: Rohanna Mertens

Our promise of improving health and dignity during the COVID-19 pandemic endures. We’re helping frontline health workers stay safe, nourished and empowered to better serve their patients by providing life-saving supplies and equipment, as well as remote training to bolster their response. We’re also providing nutritional assistance, hygiene kits and virtual health services to support people and their health needs so they can thrive. If you can, when you can, help us keep our promise to care for children and create hope for tomorrow.

When he returned home, Justin was met with kindness and acceptance from members of his community for the first time in his life.

This was a sharp contrast to how many people in his village treated him before he received surgery from Operation Smile Madagascar to repair his cleft lip.

At 53 years old, Justin had spent his life feeling abandoned and alone because of his appearance.

His only son didn’t want to be seen with his father, and his wife left him due to the stigma associated with his unrepaired cleft lip.

The years of being called names like “sima,” a derogatory term meaning cleft lip, had caused Justin to become shy.

Then one day, Justin saw a poster for Operation Smile Madagascar in his village hall with pictures of patients before and after surgery.

That was the first time Justin had seen another person who looked like him, and the first time he saw someone whose cleft lip had been repaired.

While the thought of having his smile repaired was exciting, Justin also knew he would have to take a chance and travel somewhere far from his home.

But after speaking with a local health worker, Justin mustered up the courage to attend an upcoming Operation Smile medical mission.

He made the long 24-hour journey with his niece, Rasoa, and a large group of other families from the Ifanadiana area. None of them knew for certain if they would receive surgery once arriving in Antsirabe, but they felt hopeful for the possibility of a new beginning.

Patients from across Madagascar arrive for screening during a medical mission in Antsirabe. Photo: Rohanna Mertens.

Arriving at the mission site, Justin was shocked after witnessing the scene before him: There were hundreds of people who looked like him.

Rasoa carefully documented Justin’s entire cleft care process.

Taking photos every step of the way, Rasoa, without even realising it, was creating a record of events that would one day have the potential to change the lives of more people like her uncle.

After undergoing his comprehensive health evaluation, Operation Smile medical volunteers deemed that Justin was healthy enough to receive surgery.

He shared with volunteers that he wasn’t nervous going into the operating room. He simply felt anticipation to see the change in his appearance after the procedure.

Rasoa was thrilled to call her mother, Justin’s sister, and tell her the surgery was a success.

When Justin saw his new smile for the first time, he was delighted with the result.

“Thank you for caring for me,” he said to the Operation Smile team.

After surgery, Justin smiles wide beside his niece, Rasoa, who remained by his side throughout his journey. Photo: Rohanna Mertens.

Returning home, he no longer felt the need to cover his mouth when talking to people or hide from interactions with others.

Even those who’d abandoned him in the past were willing to reconcile and join him in celebration of his life-changing surgery.

His once estranged 26-year-old son reunited with him.

Even his ex-wife, who left him because of his cleft condition, wanted to reconcile and try again at their marriage, but he declined. Justin said that he would rather start a relationship with someone new.

Today, Justin hopes to help more people like him.

With the photos Rasoa took during the medical mission, he can do just that.

“We want to help Operation Smile Madagascar find more patients,” Rasoa said. “We have photos, so we can explain what happens at the mission.”

Justin now happily lives his life as a subsistence farmer and refuses to let his cleft condition define him any longer.

Help us to continue keeping our promise to patients like Justin amid the COVID-19 pandemic. Your support today means we can help patients through these uncertain times and provide them with the care and surgery they deserve when it’s safe to resume our work.

Justin, after surgery. Photo: Rohanna Mertens.

It’s never too late for a new beginning

Photo: Margherita Mirabella.

Our promise of improving health and dignity during the COVID-19 pandemic endures. We’re helping frontline health workers stay safe, nourished and empowered to better serve their patients by providing life-saving supplies and equipment, as well as remote training to bolster their response. We’re also providing nutritional assistance, hygiene kits and virtual health services to support people and their health needs so they can thrive. If you can, when you can, help us keep our promise to care for children and create hope for tomorrow.

Yohana spent most of her life without the acceptance of her community. 

As an adult living with a cleft condition, she’d endured decades of people calling her hurtful names.

In addition to the torment she experienced, Yohana became even more isolated with the passing of her husband. Losing someone who’d loved and cared for her despite her cleft condition was almost too much pain for her to bear.

But Yohana refused to give up.

With a sister who was also born with a cleft condition, Yohana knew she wasn’t alone. But growing up wasn’t easy for her.

Having never learned about the actual causes of cleft, which can be hereditary or environmental, members of their village believed that God put a spell on Yohana’s mother, causing the sisters to be born with cleft conditions.

With beliefs and misconceptions like these deeply rooted in the minds of people living in communities around the world, harmful stigma leads to people like Yohana and her sister experiencing severe emotional pain and social isolation.

Just like Yohana, millions of people living in low- and middle-income countries are still enduring needless suffering because they’re unable to receive surgery early in their lives.

Not only are families unable to afford to travel to the nearest hospital, let alone the cost of an operation, they are also facing the barrier of local communities not having enough skilled surgeons and nurses to meet the medical demands.

Photo: Margherita Mirabella.

Having witnessed her sister receive cleft lip surgery from another organisation years before, Yohana felt relieved to know that a solution existed, but she feared she’d never be able to afford the cost of surgery.

As a subsistence farmer, she cultivates only enough food and livestock to meet her needs.

After living 51 years with an unrepaired cleft condition, Yohana never imagined she’d ever receive the surgery she deserved.

Then one day, everything changed.

Just days after Yohana heard a radio announcement promoting Operation Smile Ghana, a medical non-profit that provides free surgeries for people living with cleft conditions, a patient coordinator from the organisation arrived in her village.

For the first time in her life, Yohana had hope, and she happily registered for the upcoming medical mission.

Two months after learning about the possibility of free and safe surgery to repair her cleft lip, Yohana and other potential patients boarded a bus that took them to the mission site in Ho.

The following day, medical volunteers performed her comprehensive health care assessment to determine if she was healthy enough to undergo anaesthesia.

With patient safety as our greatest priority, all people seeking care during a mission must pass a comprehensive health evaluation, which screens for any potential health issues that could impact their procedure and ensures that each patient receives the highest quality medical care.

Yohana marveled at the love shown to her by everyone at Operation Smile.

Their kindness made her feel comfortable and helped to quell her anxiety about surgery.

Hearing that she was placed on the surgical schedule, Yohana couldn’t wait to embrace her brighter future. Instead of feeling alone and being called hateful names, she would finally be known as Yohana to everyone.

Before surgery, Yohana was relaxed and confident that her lifelong struggles with her image would soon change. What she looked forward to the most was for the people who once mocked her to see her new smile.

Yohana, one year after surgery. Photo: Margherita Mirabella.

Yohana’s only son accompanied her to the mission and was eager to call the whole family to tell them about the successful surgery.

After Yohana returned home, the community that once shunned her celebrated her transformation.

“I used to be laughed at, but now, nobody laughs at me,” Yohana said. “Thank you, Operation Smile, for changing my life.”

Help us to continue keeping our promise to patients like Yohana amid the COVID-19 pandemic. Your support today means we can help patients through these uncertain times and provide them with the care and surgery they deserve when it’s safe to resume our work.

Photo: Margherita Mirabella.

Going the extra Miles for Smiles: Madagascar nutrition programme

Held by his mother, Patricia, 14-month-old Icardi sips formula from a bottle. Photo: Henitsoa Rafalia.

Our promise of improving health and dignity during the COVID-19 pandemic endures. We’re helping frontline health workers stay safe, nourished and empowered to better serve their patients by providing life-saving supplies and equipment, as well as remote training to bolster their response. We’re also providing nutritional assistance, hygiene kits and virtual health services to support people and their health needs so they can thrive. If you can, when you can, help us keep our promise to care for children and create hope for tomorrow.

Vololona leads a team of volunteers through a crowded neighbourhood, passing worn houses before stopping to knock on a metal door.

After a moment’s pause, Patricia appears holding her son, Icardi, who’s feeding from a bottle.

With relief in her voice, she says to the volunteers, “We’re so glad to see you. This is one of the last bottles we can prepare with the baby’s formula left.”

Amid the lockdowns and restrictions, Patricia and Vololona, Icardi’s grandmother, have tried to support their family.

Vololona sells small supplies to schools and churches while Patricia makes deliveries of steels rods in the community.

But with orders not coming in, and schools and churches closed, they’ve struggled to make ends meet.

“Baby formula is expensive, but we’ve somehow always managed to buy it, since Icardi needs it to grow,” Vololona explains. “But since the lockdown, we’ve not been able to put money aside to buy formula.”

Photo: Henitsoa Rafalia.

Throughout the COVID-19 pandemic, this has become the reality for many patients and their families around the world as they attempt to provide for their loved ones amid country-wide lockdowns and restrictions.

With the inception of the Extra S’Miles nutrition programme, our local teams in Madagascar are quite literally going the extra mile for families with hopes of minimising the hardships caused by the pandemic.

“Shortly after the state of health emergency was declared and lockdown measures were put in place, our patients became extremely vulnerable,” said Dr. Howard Niarison, Extra S’Miles Programme Coordinator. “We had to take action, even if that meant braving the virus and the miles that separate them from us.”

Photo: Henitsoa Rafalia.

The programme not only helps patients continue their nutrition treatment prescribed by medical volunteers prior to the pandemic, but also assist families living in regions where lockdown measures have made it nearly impossible to meet basic nutritional needs.

Malnutrition remains one of the most significant obstacles to receiving care due to an increased risk of complications during surgery. Without timely medical intervention, patients like Icardi can face major health issues as they are more vulnerable to illness, malnutrition and even death.

The Extra S’Miles team spanned nearly two thousand miles, travelling across the country of Madagascar to deliver nutritional packs to patients living in the regions hit hardest by the virus.

Within the packs provided to families are necessary supplies and hygiene products including food, soap, washable masks, hand sanitiser, ready-to-use therapeutic food (RUTF) and more.

Member of the Operation Smile Madagascar's Extra S'Miles nutrition programme team giving ready-to-use therapeutic food (RUTF) to a patient. Photo: Henitsoa Rafalia.

In addition to the nutritional packs, the Extra S’Miles programme enabled the team to check-in on the health of patients, reassure families that Operation Smile remained devoted to their well-being despite the cancellations of medical missions and provide counsel advice on how to remain healthy until the resumption of care.

Photo: Henitsoa Rafalia.

“It’s during difficult times that you know who your real friends are,” said José Augustin, patient coordinator for Operation Smile in Madagascar. “This health crisis is certainly a difficult time for our patients. Because we care for them, we’ll reach out to them since they can’t come to us.”

More than 530 families received the Extra S’Miles nutritional packs thanks to the dedicated team members who refused to let the pandemic prevent them from seeing smiles on the faces of patients in need.

Operation Smile Madagascar patient Coordinator Jose Augustin shares a smile with a patient. Photo: Henitsoa Rafalia.

With tears in her eyes, Patricia happily accepts the nutritional pack and the six cans of baby formula the Extra S’Miles team offers her.

Raising Icardi has been a long and difficult journey for Patricia and Vololona.

Despite their unconditional love for both Icardi and his older sister, they’ve faced seemingly insurmountable barriers in their attempts to care for a child living with a cleft condition.

Icardi’s father left shortly after his premature birth, unable to handle the stress of a baby born with cleft lip.

Smile Photo: Henitsoa Rafalia.

Many families like Icardi’s joined Operation Smile Madagascar’s nutrition programme with the hope of a new beginning.

The programme provides patients and families with educational support, ongoing health assessments and RUTF, a nutritive peanut paste that helps malnourished children gain enough weight to become healthy enough for safe surgery.

“Icardi is a survivor,” Vololona said. “That’s in part thanks to all the counsel and help we’ve received from Operation Smile. With this health crisis, Operation Smile has not forgotten him, nor us. We’re extremely grateful.”

Today, the Operation Smile Madagascar team remains steadfast in their commitment to the health and wellbeing of patients.

Through their continuous efforts to provide nutritional support, 62 patients were enrolled in the organisation’s nutrition programme as of October 2020. Of that total, 47 children reached an optimal weight with 13 more making significant progress along their journey to becoming healthy enough to receive safe surgery.

Help us to continue keeping our promise to patients like Icardi amid the COVID-19 pandemic. Your support today means we can help patients through these uncertain times and provide them with the care and surgery they deserve when it’s safe to resume our work.

After 35 years, Tereza is finally free

Tereza, 35 years old. Photo: Margherita Mirabella.

Our promise of improving health and dignity during the COVID-19 pandemic endures. We’re helping frontline health workers stay safe, nourished and empowered to better serve their patients by providing life-saving supplies and equipment, as well as remote training to bolster their response. We’re also providing nutritional assistance, hygiene kits and virtual health services to support people and their health needs so they can thrive. If you can, when you can, help us keep our promise to care for children and create hope for tomorrow.

After surgery, Tereza embraces her newfound happiness, but the pain of living 35 years with an unrepaired cleft condition isn’t something she’ll forget.  

As a child, Tereza faced torment because of how she looked. As she grew to adulthood, the bullying only intensified.

Some people from her community told her that she was only “half a person” and that she had nothing to contribute to village life.

Despite her dream of one day being accepted by those around her, the harassment caused Tereza to abandon her schooling and forced her to become completely ostracised from her village.

Although there were three people also born with cleft conditions in her community, Tereza’s decision to distance herself from her village also meant separating herself from the only three people who could understand the pain she was facing.

During a seemingly normal day, one of the people living with a cleft lip left to attend an Operation Smile medical mission in 2014.

Without enough money to afford the bus fare that would take her to Lilongwe, Tereza was forced to watch as the bus drove away.

But upon seeing them return with a new smile, Tereza was motivated. And she refused to let anything get in her way of attending the next mission.

Her opportunity came after she contacted Operation Smile Malawi, which arranged free transportation to the upcoming mission, eliminating the obstacle that stood in her way a year before.

Her perseverance paid off, and Tereza was taking the first step in her journey toward ending the painful harassment that had become all too familiar.

Although there were others in her community living with cleft conditions, Tereza believed that they were the only ones.

But after arriving at the mission site, Tereza was shocked to see so many others who looked like her.

For the first time in her life, Tereza felt like she was no longer alone.

Potential patients gather during a 2015 Operation Smile medical mission in Lilongwe, Malawi. This was the day Tereza learned that she was placed on the surgical schedule to receive her free cleft surgery. Photo: Margherita Mirabella.

It’s estimated that, worldwide, a child is born every three minutes with a cleft, which is about one in every 500 to 750 births.

We’re working to discover the causes of cleft through research and putting our evidence into action to prevent cleft conditions before they develop in the womb.

Tereza was amazed by the compassionate volunteers who were donating their time and expertise to patients and their families affected by cleft conditions – a sharp contrast to how she was treated in her community.

Globally, Operation Smile has improved the health and dignity of more than 300,000 patients living with cleft conditions, helping them to breathe, eat, speak and live a better quality of life with greater confidence.

In Malawi, our team is working to address the backlog of people like Tereza who have been unable to access the surgery they need.

For the first time in 35 years, Tereza was among people who would accept her for who she was, and she didn’t have to worry about what they’d say when they saw her cleft lip.

She found peace in the hectic environment of health assessments and pre-surgical appointments and was comforted by the fact that she was surrounded by kind people who understood what she was going through.

Tereza was overcome with happiness and relief when medical volunteers placed her on the schedule to receive her free surgery.

“When I have my surgery, it will be like I’m born again,” Tereza said. “I will be a new person.”

Tereza, after surgery. Photo: Margherita Mirabella.

While looking at her photo taken before surgery, Tereza admitted that she wasn’t happy. Living with an unrepaired cleft had taken a toll on her self-esteem and confidence.

Now, her life is very different.

“I am living a free life,” Tereza happily explained.

Since her successful surgery, Tereza has returned home and become part of her community again.

She loves engaging with others because she no longer fears being ridiculed.

Tereza feels excited to have had the opportunity to receive her life-changing surgery and plans to educate her community about cleft and Operation Smile’s life-changing work with hopes of preventing anyone else from experiencing the pain and loneliness she endured.

Photo: Margherita Mirabella.

From patient to programme coordinator

Our promise of improving health and dignity during the COVID-19 pandemic endures. We’re helping frontline health workers stay safe, nourished and empowered to better serve their patients by providing life-saving supplies and equipment, as well as remote training to bolster their response. We’re also providing nutritional assistance, hygiene kits and virtual health services to support people and their health needs so they can thrive. If you can, when you can, help us keep our promise to care for children and create hope for tomorrow.

This story was written by Brady Hishmeh, Operation Smile Student Programmes Media Intern.

As a senior in his university looking to kick-start his career right after graduation, Lam Tran devoted his time and focus to the job hunt. From checking postings to reading helpful guides and so much in between, it turns out Lam wouldn’t just find his career — he would find his calling. 

In a book titled “How Much Youth is Worth,” he discovered Operation Smile.

It was listed in a paragraph where the author shared the importance of Vietnam’s youth working for non-profit organisations to better their communities. Eager to land a job and taking the suggestion from the book, he didn’t think twice about Operation Smile and quickly filed applications to several organisations in Vietnam.

Operation Smile was the first to respond — and that’s when he realised this wasn’t his first interaction with the organisation. He read its name and stopped.

Lam Tran with Operation Smile Co-Founders Dr. Bill Magee and Kathy Magee. Photo courtesy Lam Tran.

“Oh wow,” Lam recalled thinking at the time. “I recognised the organisation that brought me free surgery in the past.”

And when Lam arrived for his interview with Operation Smile Vietnam, the location’s programme director Ms. Duc said, “Welcome back, Lam.”

With his important perspective and drive to help others, Lam’s story seems to have come full circle as he’s now helping Operation Smile’s patients receive the same kind of care he did, and from the same organization.

Photo courtesy of Lam Tran.

“In Operation Smile, we have a very meaningful slogan: ‘Changing lives, one smile at a time,’” Lam said.

“That’s true for me. This mission at Vietnam Cuba (hospital) changed my lips, my nose and also my face. I understand (patients’) feelings, their inferiority, and I know the advance they get when they’re more confident. One surgery not only changes the smile but also changes someone’s life. So, as an Operation Smile coordinator, I always try my best to help people like myself.”

Photo courtesy of Lam Tran.

Born with a cleft condition in Thai Binh, Vietnam, a small province south of Hanoi, Lam said his greatest challenge growing up as a child living with cleft was his lack of confidence.

Having to deal with bullies is pretty universal, something that almost every child experiences. But for children with cleft conditions, it can serve as a constant reminder that there’s something separating yourself from your peers. It’s an easy target for jibes, jokes and painful stigma.

The amazing thing about a cleft condition is that it can be repaired. Lam’s had three surgeries, repairing his lip and nose.

“Since then, I’m more confident, more ‘normal,’ and I don’t see myself as a cleft boy anymore. I’m really able to be myself and do my own things,” Lam said.

Photo courtesy of Lam Tran.

Having returned to Operation Smile, though in a different role, Lam realised the importance of his work.

“Running a mission, doing coordinator work, helping the kids, everything seemed to tell me, ‘Lam, this is the mission of your life.’”

Lam is a living example of the impact surgery can have on an individual.

Focusing on his career as a programme coordinator allows Lam the ability to help lift children from the uncertainty of life with a cleft condition into the reality of confidence, strength and self-assuredness that surgery provides.

When asked what he believes is his greatest achievement in life has been so far, he responded: “I haven’t achieved my greatest goal so far, I’m still on my way there: Help as many kids as possible.”

Photo courtesy of Lam Tran.

Enok’s path

Margherita Mirabella, Operation Smile.

Enok remembers being jeered, mocked, chased by packs of children and having people recoil in disgust at his cleft lip. While his memories echo the stories of thousands of Operation Smile patients – most young children – Enok already endured a lifetime of torment when he received surgery at 25 years old.

Suffering from a severe bilateral cleft lip, Enok finally summoned the courage to seek help during an Operation Smile medical mission to Rwanda in 2013. Even then, Enok was reluctant to receive surgery. It was on a visit to his village that Operation Smile volunteers saw him persuaded.

“If they were not here to convince me, I wouldn’t be able to temper going into a bar and sitting with other people and sharing a cup,” Enok said. “But now I can enter into any place and people even come to share the cup with me.”

Margherita Mirabella, Operation Smile.

It’s been three years since Enok’s life was irrevocably changed by Operation Smile. Though his surgical scars are almost invisible to the naked eye, his emotional scars continue to heal as this soft-spoken man recalled the daily struggles he once faced.

“I walk to work from my home and before the surgery, I would take all sorts of detours and creep through people’s gardens and farms so that I could avoid being seen,” Enok explained as he walked through lush green vistas on his way home from the bakery at which he works. “Children would either run away if they saw me or run behind shouting horrible things.”

Margherita Mirabella, Operation Smile.

It’s hard to believe that Enok’s walks of shame ever occurred, as he is constantly stopping to greet yet another friend or pass along the latest news and gossip with a neighbour. People called his nickname throughout the walk; and when they yelled, “Bibi,” it wasn’t hard to detect notes of affection and pride in the tone.

“Before (the surgery), everyone was scared of me. I couldn’t stand and talk to a girl, but now I can easily find a girl on the roadside and stand for a while and talk to her,” Enok explained as he grinned. “Even young kids would get frightened when they saw me, but nowadays I am a normal person in the community. I meet people and they talk to me like they would someone who has been there the whole time.”

When Enok mentioned being “there the whole time,” he referred to being cruelly ostracised and made to feel as if he didn’t exist before the surgery. At home, his mother hovered in the background, ever-protective of her seventh child and confirmed this misery.

RWA_2016_Enok_Enok Birimoyesu_Male, 25 Years Old, After, BCL, Original Chart Number 155, Original Mission Dates Sept 2013, Original Mission Location Ruhengeri (Musanze), Rwanda - Ruhengeri Hospital. Post-Op Dates May 2-3, 2014, Post-Op Location Ruhengeri (Musanze), Rwanda - Ruhengeri Hospital, Post op Chart 175. Follow up, Home Visit May 2016, Interviewer Sean Robson. (Operation Smile Photo- Margherita Mirabella)

“Whenever I was going somewhere with Enok, young kids would run away because they thought he would bite them,” she said. “I kept hoping and praying that God would help him. When it happened, I praised God for it because it was an answer to my dreams. It was done perfectly and he is really new as he says.”

Since receiving surgery, Enok has enjoyed a more fulfilling experience working at the bakery as well.

“I have regained respect from my community, including my boss and colleagues, because before I was less considered and working in a way isolated from the rest,” Enok explained.

Margherita Mirabella, Operation Smile.

There is a confidence around the baker and, together with his mother, he’s become an advocate for Operation Smile’s work in Rwanda. They’ve even gone so far as to track down a nearby resident and friend, Veronica, who has a cleft lip and encourage her to seek surgery.

“She is afraid for now, but we are trying to convince her,” Enok said. “As for the good things that have happened to me and changed me to a new person, if I meet someone with the same problem, I would advise him or her to go to see the doctor and find out if there is any opportunity for surgery.”

Margherita Mirabella, Operation Smile.

Let’s Talk: Speech Therapy Programme “HablemOS” Helps Thousands Across Latin America

Operation Smile Nicaragua's care centre in Managua was the first centre to reopen its doors to patients amid the pandemic and began providing a mix of in-person and virtual consultations. Photo: Operation Smile Nicaragua.

Our promise of improving health and dignity during the COVID-19 pandemic endures. We’re helping frontline health workers stay safe, nourished and empowered to better serve their patients by providing life-saving supplies and equipment, as well as remote training to bolster their response. We’re also providing nutritional assistance, hygiene kits and virtual health services to support people and their health needs so they can thrive. If you can, when you can, help us keep our promise to care for children and create hope for tomorrow.

Despite the unprecedented challenges the COVID-19 pandemic brought to our medical programmes and care delivery, we’ve refused to stand aside in the face of this adversity.  

Volunteers and staff working in care centres throughout Latin America found an opportunity to come together to make sure that we kept our promise of caring for patients and their families amid lockdowns and country restrictions.

For patients born with cleft lip and cleft palate, speech therapy before and after surgery is an essential component of comprehensive cleft care.

Most of this ongoing work was done in person with patients at centers, but with the impact of the pandemic hitting countries worldwide, providing this care suddenly became impossible.

Operation Smile Regional Director Lizet Campos. Photo: Jasmin Shah.

Working closely with her fellow regional directors, Operation Smile Regional Director Lizet Campos created the concept of the programme called “HablemOS,” a play on words meaning “let’s talk” in Spanish with the capitalised “OS” at the end of the word symbolising Operation Smile.

Cleft conditions can make eating extremely difficult, so speech therapists oftentimes conduct consultations soon after a child is born, providing families with advice on how to properly feed their child.

Hundreds of patients have received speech consultations at care centres in Managua, Nicaragua; Asunción, Paraguay; Bogota, Colombia; and Caracas, Venezuela. Photo: Rohanna Mertens.

Speech therapists also provide patients with palate-strengthening exercises before surgery that help improve the procedure’s outcome. As a child grows and begins to speak, their ongoing care helps patients be able to speak more clearly.

In collaboration with our medical oversight team, speech council, programme manager Mauricio Rojas of Mexico and programme coordinator Maria Cristina Galindez of Venezuela, Lizet and her team implemented HablemOS in mid-August of this year.

With the support of Operation Smile Sweden and generosity of the Swedish Postcode Lottery, Lizet and her team have a fully funded programme that they hope will show patients and their families that Operation Smile remains committed to them despite the current global challenges.

“So far, the programme is proving to be a resounding success,” Lizet said. “To date, our teams in Latin America have delivered speech consultations to more than 3,200 patients. There’s also an in-person component, as 629 of the consultations were given at our care centres in Managua, Nicaragua; Asunción, Paraguay; Bogota, Colombia; and Caracas, Venezuela, though this continues to be conducted on a much more limited basis than the virtual therapy sessions.”

Volunteers and staff feel inspired by the deepening of the organisation’s investment in speech therapy, which is critical to helping our patients live dignified and fulfilling lives.

Longtime Operation Smile volunteer Milagros Rojas joined the HablemOS team, bringing with her years of experience as a speech pathologist. Photo: Margherita Mirabella.

The HablemOS team is honoured to lead the way in developing a programme that has the potential to be replicated and implemented everywhere that Operation Smile works.

“Just imagine, in these sessions, through songs and stories, we can make our little ones exercise their speech abilities and keep them from finding it tedious,” said volunteer speech pathologist Milagros Rojas. “Instead, these sessions turn into play sessions.”

Knowing that many patients’ families had access to either internet-connected smartphones or computers, speech therapists were contacting families and resuming or beginning virtual consultations within weeks for hundreds of patients while the doors of the centres remained closed to the public.

If families lacked internet access, therapies were delivered over the telephone as well.

With a lack of certified speech therapists like Milena Cleves in Latin America, the HablemOS program provides opportunities to increase the number of qualified therapists in the region. Photo: Marc Ascher.

“There’s a lack of certified speech therapists throughout the Latin America region and in many other low- and middle-income countries,” Lizet said. “So we knew it would be critical to offer training and education opportunities to speech therapy providers so that more – and more qualified – therapists can deliver care to more patients.”

Working together with the Mexican speech and language therapy non-profit Hablarte E Integrate, the training and education portion of the programme has enrolled 61 speech therapists from 13 Latin American countries.

“Although we’re professionals, we can always grow in knowledge,” said Operation Smile Panama volunteer speech therapist Alina Navarro. “I’m delighted to be acquiring a new perspective. In terms of mentoring, it’s been useful to discuss the cases together with other professionals.”

The HablemOS program team feels driven to keep delivering much-needed speech therapy care to patients as the world continues to cope with the effects of COVID-19.

“I want to give thanks to those who made this opportunity possible,” Milagros said. “COVID was not a limitation, because anything is possible when things are done with humanity and infinite love.”

Help us to continue keeping our promise amid the COVID-19 pandemic. Your support today means we can help patients through these uncertain times and provide them with the care and surgery they deserve when it’s safe to resume our work.

HablemOS team member and programme manager Mauricio Rojas, left, shares a special moment with Jonathan during a 2019 medical mission in Mexico. Photo: Rohanna Mertens.

Two Thumbs-Up

Nine-year-old Bipul during patient announcement day at Operation Smile’s 2018 medical mission in Durgapur, India. Photo: Jasmin Shah.

After loving and raising three daughters together, Nioti and her husband, Monbula, remained hopeful that they would finally welcome a son into their family.

When Nioti gave birth to their fourth child, Bipul, during the early hours of one winter night, she and Monbula were overjoyed to see that their prayers had been answered: Their first son was born.

But instead of feeling relief and excitement on the day of Bipul’s birth, the family was overcome with great pain when they looked at their only boy and saw that he was born with a cleft lip.

Lacking proper knowledge on the actual causes of cleft, which can be environmental or hereditary, Monbula and Nioti believed that Bipul’s cleft condition was a punishment from the gods due to the influence of a lunar eclipse during her pregnancy.

While some people believed Bipul to be “polluted” because of his cleft lip, Nioti had a love for her son that outweighed everything else.

“My fate was to have this baby,” Nioti said.

Monbula and Nioti learned about the possibility of surgery on the same day that Bipul was born. And while they didn’t know what Bipul’s future held, they were confident that their son would one day receive the care they knew he needed and deserved.

And when the family learned that free surgery was possible in the nearby town of Odisha, it seemed as though that day had arrived.

But for 3-year-old Bipul, the idea of leaving home frightened him. And so, his family decided not to go, resulting in Bipul having to continue living with an unrepaired cleft.

As Bipul grew older and started going to school, the teasing and name-calling he received from some of his peers became almost too much for him to bear. He would often come home crying due to the harmful abuse he endured throughout the day. In an attempt to comfort her son, Nioti would tell Bipul that he would one day receive surgery that would repair his cleft lip and change his life.

When Bipul was 9 years old, the surgery his mother always talked about didn’t feel too far away after Operation Smile hosted an awareness event in their village for an upcoming medical mission in Durgapur.

This time, Bipul wasn’t afraid.

He even said that, if he had to, he would travel on his own to reach the mission. As if all the fear that once held him back had vanished, Bipul bravely made the journey with his family toward a new smile.

Bipul with his mother, Nioti, as they wait for his surgery to repair his cleft lip. Photo: Jasmin Shah.

At every stage of the mission, whether it was receiving a health evaluation or waiting during patient announcement day, Bipul had a huge smile on his face as he gave two thumbs-up to anyone who passed by.

Bipul’s courage helped him not only face the unfamiliar environment of the mission, but also connect with other patients and volunteers at the hospital.

Seven-year-old Monu and Bipul pose for a photo during patient announcement day. Photo: Jasmin Shah.

Seven-year-old Monu – whose family also learned about the mission at the same awareness event – was one patient in particular who formed a strong bond with Bipul.

While living with a cleft condition can put a child’s life in jeopardy with an increased risk of illness and malnutrition, it can also lead to a life of loneliness and isolation due to the harmful stigmatisation.

For Monu and Bipul, they’d lived five minutes away from each other their entire lives – but never met each other until that day at the mission.

Monu’s parents, Santosh and Bina, knew that their son wasn’t the only child living with a cleft condition. But as they looked around the mission site, they were shocked to see the number of families who had arrived in Durgapur seeking out safe surgical care for their children.

Bipul and Monu play together as they wait to receive their cleft lip surgeries. Photo: Jasmin Shah.

After they passed their comprehensive health evaluations, Bipul and Monu stayed near each other throughout the mission, playing happily together in the child life area before their surgeries. Taking after his older companion, Monu also began giving a thumbs-up to the volunteers and staff members he met. Later during the mission, the Operation Smile medical team healed the smiles of the new friends, who remained close even after returning home.

With a safe surgery from Operation Smile, a patient’s future becomes brighter. Not only does a child get the opportunity to go to school and make friends without fear of bullying, but they also gain a newfound confidence to chase after a dream that they once feared would never come true.

Monu’s dream is to become a police officer. Bipul wants to continue receiving an education and eventually learn to speak English.

For Monu and Bipul, a condition that often prevents people from building relationships ended up uniting two unlikely friends.

Monu and Bipul one year after receiving surgery from Operation Smile. Photo: Jasmin Shah.

Pre-surgical dental care saved Janat’s life

Janat, 1-month-old. Photo: Jasmin Shah.

Our promise of improving health and dignity during the COVID-19 pandemic endures. We’re helping frontline health workers stay safe, nourished and empowered to better serve their patients by providing life-saving supplies and equipment, as well as remote training to bolster their response. We’re also providing nutritional assistance, hygiene kits and virtual health services to support people and their health needs so they can thrive. If you can, when you can, help us keep our promise to care for children and create hope for tomorrow.

When Janat entered the world in her small Moroccan village, no one could’ve predicted the physical and emotional challenges that laid ahead for her and her family.

Remembering back to the day when she saw her daughter’s smile for the first time, Fatima recalled the shock and fear that filled her heart.

But as she held her newborn baby in her arms, Fatima knew that there wasn’t anything in this world she wouldn’t do to protect and care for Janat.

However, due to factors outside of her control, keeping that promise became increasingly more difficult as Janat’s health rapidly began to decline.

For children born with cleft conditions, especially a cleft palate like Janat’s, they often encounter major hurdles with feeding and struggle to receive proper nourishment during the most critical time in a baby’s development.

Janat and Fatima confronted these obstacles every day.

“I was afraid that I was going to lose her,” Fatima said. “She was suffocating and the milk would come out of her nose. She can’t finish a bottle.”

Fearing for her daughter’s health, Fatima helplessly watched as Janat steadily became smaller and sicker during her first weeks of life.

“I knew that surgery was possible,” she said. “But I was scared and didn’t know where to go or who to ask.”

This is the case for many families of children born with cleft conditions.

Despite the consistent failed attempts at feeding Janat and the fear of watching her become more malnourished each day, Fatima persevered, determined to keep the promise she made.

Then one day, Fatima’s hopes were realised.

Volunteer dentist Dr. Teresita Pannaci of Venezuela, left, observes as Janat is fed by her mom while testing out her new feeding plate. Photo: Jasmin Shah.

After seeing an Operation Smile Morocco commercial, Fatima learned that the organisation not only provides free surgical care, but that there was an upcoming medical mission taking place in a little over a week in Oujda, a neighbouring city.

Overjoyed to learn there were skilled people devoted to caring for children with cleft conditions, Fatima and her husband prepared to make the journey, hoping that it wasn’t too late for 1-month-old Janat, who’d already lost nearly half of her birth weight.

Alongside hundreds of families seeking out care from Operation Smile Morocco’s highly trained medical professionals, Janat and her parents arrived in Oujda for screening day fully prepared to do whatever they could to save her life.

It was a long and gruelling day for the family as volunteer paediatricians, anaesthesiologists, nurses and other specialties assessed Janat’s health throughout the screening process.

It quickly became clear to the volunteer team that Janat wouldn’t pass her comprehensive health evaluation.

Having been unable to eat properly for the first month of her life, Janat had become severely malnourished and wasn’t healthy enough for safe surgery.

Just as Fatima started to think that they’d return home without a solution, the team of volunteer dentists on-site sprang into action.

Joining forces with Operation Smile Morocco staff, Drs. Carmen Kamas-Weiting of the U.S. and Teresita Pannaci of Venezuela stepped in, quickly transporting Janat and her family to the local care centre.

“I was so happy,” Fatima said while surrounded by the dental team preparing to fit Janat with a feeding plate. “I’m happy that, finally, she will receive help.”

With a cleft palate – a gap in the roof the mouth – patients struggle to eat or drink because milk oftentimes spills out of their nose or causes them to choke, making it almost impossible to obtain the necessary amount of nutrition needed to thrive and gain weight.

Having a cleft palate also makes patients vulnerable to illness, as they are more susceptible to infection, disease and even death.

To protect patients like Janat from the dangers of malnourishment – dangers that can prevent them from receiving the timely cleft surgery they need – dentists like Teresita and Carmen rely on pre-surgical dental care like feeding plates.

The soft mold of Janat's cleft palate, which later became her feeding plate that would allow her to drink milk with ease. Photo: Jasmin Shah.

The plates serve as the first step toward surgery, leading patients away from starvation and guiding them toward a healthier life – toward surgery.

“A baby with a cleft palate can’t eat,” Teresita said. “That’s why it’s so important to rehabilitate the function of breathing, sucking and swallowing food so that the child is eating in the home environment. This is the real reason why treatment must be done from birth.”

Patiently waiting for the dentists to create the plate, Fatima shared with the team that Janat could only manage to consume around three ounces of milk throughout an entire day. This amount is dangerously lower than the recommended two to three ounces of milk newborns are expected to consume every few hours.

With the feeding plate, the process of eating for Janat was transformed.

After testing out her new plate for the first time, Janat drank two and a half ounces of milk in less than eight minutes.

“I started to feel calm; [the plate] was working,” Teresita said. “I looked at her mother, and that’s when I saw she had tears in her eyes. When I asked, ‘Why are you crying? What kind of tears are these?’ She said, ‘They are tears of happiness,’ because she knew that her daughter was safe.”

Fatima, filled with relief, revealed that it was the first time she’d ever seen Janat drink without suffocating.

“I was so happy. I was so relieved,” she said. “I’m very grateful for what you’ve done for my daughter. I’ve never seen kind hearts like yours before.”

Fatima and Janat returned to the care centre once more during the mission before heading home. Adapting well to her new feeding plate, Janat slept comfortably in her mother’s arms with a belly full of milk for the second day in a row.

For the first time, Fatima watches as Janat drinks milk with ease thanks to her daughter's new feeding plate. Photo: Jasmin Shah.

Drinking a few ounces of milk may seem insignificant, but the plate also enables patients to reach even larger milestones: improving nutrition, achieving and maintaining weight for surgery, breathing easier for a better quality of life, lessening the severity of the cleft palate as well as improving jaw and nose development.

While Janat didn’t receive surgery during the March Oujda mission, Fatima’s determination was stronger than ever before, and she planned to return to the centre on an ongoing basis to allow for volunteers to monitor Janat’s care and progress.

Janat’s journey so far has been filled with fear, uncertainty and seemingly impossible obstacles. But no matter what lies ahead, Fatima refuses to give up.

“Nothing is too hard when it comes to my daughter. I will do anything.”

Shortly after the conclusion of the March mission in Oujda, Operation Smile Morocco, like all of our teams around the world, made the decision to postpone future missions and care delivery at care centres. While the decision was made to ensure the safety of patients, families, volunteers and staff, the postponements left people like Janat and Fatima waiting.

Thankfully, through closely following all health ministry guidelines and protocols, including mask-wearing, social distancing, temperature screenings and more, the Moroccan team has successfully reopened its care centre doors, allowing for waiting patients like Janat to return and continue their ongoing care.

Today, Janat is 10 months old and her condition has dramatically improved.

Through her family’s commitment to improving her health and the success of her feeding plate, Janat’s weight has significantly increased and she continues to show incredible developmental progress. To this day, Fatima remains hopeful for Janat’s continued improvement.

“My daughter will be OK. I’m happy now,” she said. “Surgery will be life-changing. In the future, Janat will get an education.”

Help us keep our promise to patients like Janat amid the COVID-19 pandemic. Your support today means we can continue to help them through these uncertain times and provide them with the ongoing pre- and post-surgical care they deserve when it’s safe to resume our work around the world.

10-month-old Janat, today. With the help of her feeding plate, along with her family's dedication and love to care for her, Janat has become healthier and gained considerable weight. Photo courtesy of Janat's family.