Overcoming Her Obstacles

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.

At 4 years old, Nazifa hadn’t spent much time outside of the clay and straw hut where she lived.

Her family shared the house with their livestock — a cow and some sheep — and they had no electricity or running water. The stamped clay floor was cold and dusty. A fire on a stone stove on the floor lit up the hut as her mother roasted corn in a pan.

Here, Nazifa spent her time while her siblings and the other children were out playing in the village on a hill in southwestern Ethiopia.

Nazifa was born with a cleft lip, and no one in the village had ever seen anything like it before. They were scared and thought it could be the work of an evil spirit. Some people in the village thought it could even be contagious.

“Not even Nazifa’s siblings want to use the same cup as her. When they are out playing, there is a game where you throw stones into a hole in the ground. They say they can use the hole in her lip instead,” said Sherab, Nazifa’s father. “She is not the only one who suffers. My wife and I cry when we hear what they say to her.”

Four-year-old Nazifa, before. Photo: Margherita Mirabella.

However, a local health clinic informed the family about Operation Smile, which forever altered the course of their lives.

Soon after, Nazifa and her father were among the hundreds of children and parents who travelled to the capital city of Addis Ababa with the hopes of receiving free cleft surgeries performed at an Operation Smile medical mission.

Taking his daughter to the distant hospital was a huge challenge and commitment for Sherab. Being a subsistence farmer, living off what they could harvest from the fields, he had never been outside of his region before nor had he visited a big city. The family had to borrow money from their neighbours to afford bus fare, so only Sherab and Nazifa could make the trip while his wife stayed home with Nazifa’s siblings and their newborn baby.

When they reached Addis Ababa, Nazifa caught a cold in the cool, high-altitude air. She coughed as medical volunteers performed her comprehensive health care assessment, an important step in determining if patients are healthy enough to receive surgery.

Sherab was not only anxious about his daughter’s health, but also because her cold could potentially postpone surgery and they would have to make the resource-draining trip again.

Photo: Margherita Mirabella.

Finally, after some days of medication, Nazifa’s cold subsided and she was cleared for surgery.

“I think everything went well. Nazifa is doing fine even though there were some problems to start with. Everything has turned out really well. Her muscle is fine and everything is working. The lip will be perfect,” said Dr. Malin Hakelius, a volunteer plastic surgeon from Sweden.

In the recovery room, Sherab cried when his daughter finally woke up after surgery. He had been so worried, but now he could relax.

At home, his family and neighbours were waiting to celebrate Nazifa’s surgery with a big homecoming meal.

The day after surgery, Nazifa looked in a mirror for the first time in her life. Never having seen her reflection before, she tried to see if there was someone behind the mirror.

Sherab just smiled and shook the hands of as many team members as he could. “Thank you,” he said in English, bowing respectfully as is customary in Ethiopia. “Thank you!”

On the last day of the medical mission, Nazifa and her father prepared to leave the hospital and take the long bus ride home. Nazifa was playing with some new friends, forming her lips to a perfect round shape to blow soap bubbles, laughing and enjoying herself.

That day, the Operation Smile team left the hospital after five days of surgery and final post-operation check-ups.

All the equipment had been packed and stowed, and the team-members were on the way to the airport, when they got a message: Nazifa had fallen from a stone wall, and the stitches on her lip had ripped open.

Nazifa's stitches from her first surgery from Operation Smile reopened after falling while playing with friends. Photo: Margherita Mirabella.
Nazifa's stitches from her first surgery from Operation Smile reopened after falling while playing with friends. Photo: Margherita Mirabella.

Sherab was devastated.

Operation Smile Ethiopia volunteer Ruth Emmanuel helped Sherab get Nazifa first aid care for the wound at the hospital and found them a place to stay for the night.

Although the volunteer medical team was still in the country, Malin said that an immediate repair on the wound wouldn’t be possible due to the trauma caused by the fall. Their best treatment plan was to clean the wound, let it heal and repair it during the next medical mission to Ethiopia.

After four years of hoping for a better life for his daughter, Sherab left the mission with Nazifa wondering if there would be a second chance for her to get surgery again.

Six months later, Operation Smile returned to Jimma, which was even closer to Nazifa’s home in southwestern Ethiopia.

Sherab travelled with Nazifa to the mission site, holding her hand tightly and not letting go of her, even for a second.

This time, everything went smoothly for Nazifa. Passing her comprehensive health evaluation once again, she underwent her reparative surgery and not only left the mission with her father but a brighter future and a life free from bullying and social isolation.

Today, Nazifa spends most of her time playing with friends from her community. The bullying and teasing she once endured has come to an end, and she’s enrolled in school, learning how to read and write for the first time.

Photo: Jörgen Hildebrandt.

“I like to learn things,” Nazifa said.

Nazifa must cross a river every day to go to school — a minor obstacle compared to the social barriers her surgery has helped her overcome.

Photo: Jörgen Hildebrandt.

Now 12 years old, Nazifa hopes to one day become a doctor so she can care for others like the medical volunteers who cared for her.

Her parents are thankful that surgery through Operation Smile has opened the door for Nazifa to pursue her dreams.

“She can read and write now, something we never learned ourselves,” Sherab said. “When it is time to go, she stops with everything she’s doing and runs to school. She runs because education is the foundation of life.”

COVID-19 Conversation: Going the Extra Mile in India and Madagascar

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.

Now, more than ever it’s our charge to safeguard the health and wellbeing of individuals around the world. We’re building upon our expertise in delivering cleft surgery and care in resource-limited settings as well as our history of improving the health and dignity of those we serve.

That’s why we’re finding the most meaningful ways that we can support people and their health needs in the communities where we work, even when medical missions are postponed, care centres are closed, and the future feels uncertain. It’s in this uncertainty that our swift action is required, and we’re doing everything that we can to help patients, families, and countries as this affects them.

While we’re still unable to provide direct patient care in nearly every place where we work, we’re beginning to resume direct activity in places where health authorities have deemed it safe to do so. In late May, we were able to resume providing surgeries in Vietnam and Italy.

This “COVID-19 Conversation” featured a live question-and-answer session on the topic of going the extra smile to support patients and families affected by COVID-19 lockdowns in India and Madagascar with Abhishek Sengupta, Operation Smile India’s executive director and regional director for India, Russia and Italy; and Dr. Howard Niarison, Operation Smile Madagascar’s COVID-19 programme coordinator and education and training coordinator. The session was hosted by John Streit, our managing editor and writer; and Laura Gonzalez, our digital content manager moderated the audience’s chat and questions.

Click here to watch past COVID-19 conversations.

Event Transcript

Laura Gonzalez: All right, we’re going to jump right in. Again, welcome everyone, thank you so much for joining this COVID-19 Conversation on going the extra mile in India and in Madagascar. My name is Laura Gonzalez, and I am the digital content manager for Operation Smile. I work a lot in helping to tell our story to our online audiences. I’ll kick it over to my colleague John Streit for his introduction.

John Streit: Hi, everybody. I’m John Streit, our managing editor and writer. Today, I’ll be moderating the chat and questions area of our conversation today. If you have any questions or any comments or want to discuss anything on the side while our panelists are talking, feel free to enter that into those two fields, and then at the end of our discussion with them today, we will have an audience Q&A portion, which I’ll be leading as well. Thank you all for joining.

Laura: Thank you, John. Now I am so excited to introduce you to our esteemed panelists today.

Leading this conversation, we have Operation Smile India’s executive director and regional Director, Abhishek Sengupta. Abhishek became involved with Operation Smile, first as a college student when he was recruited to translate Bengali to English for a medical mission near his school. Since then, he has grown with the organisation and has held many roles, including programme coordinator, programme manager and regional programme manager, which led him to his current position as the executive director of Operation Smile India, and the regional director in India, Russia and Italy. His organisational knowledge and expertise in international development are essential to our operations in India, a country with a tremendous need for cleft care.

We also are happy to welcome Operation Smile Madagascar’s education and training coordinator, Dr. Howard Niarison (I’m going to say that wrong. I have no French background, so thanks for your patience, Howard!) Howard is a doctor and graduate of the Medical School of Antananarivo in Madagascar. He has served with Operation Smile since October of 2019 as the education and training coordinator for our Global Essential Surgery project and, since April of 2020, as the COVID-19 programme coordinator.

Howard, Abhishek, thank you so much for participating today.

Let’s jump right in. Howard, what is the current state of COVID-19 in Madagascar, and how has the virus impacted day-to-day life and the way that we’re working with our patients?

Howard Niarison: Thank you for your question, Laura. First, hi, everyone, and we’re so happy to talk with you today. We’re going to talk about COVID-19 and this current state and the impact of this terrible virus. Unfortunately, unlike some western countries, Madagascar is now around the pandemic take. It’s shown by the incredible increase of numbers for two months now. Just to show you, on July 15th, we registered around 5,600 confirmed cases and 43 deaths. You may say for 26 million of people, it’s not that much, but it could be explained in part by a low testing capacity in the country. We have also two epicentres of COVID-19 now. First big one is Tana, the capital of Madagascar, the city where I am, and Tamatave; it’s on the east coast. Both regions are under total lockdown. In other regions, lockdown is reduced, but the sanitary emergency situation still remains.

All the facilities are now overwhelmed, then the government started last week to open three new COVID-19 treatment centres. It should receive around 1,000 patients, especially with symptoms.

Let’s talk a little bit about impact of COVID-19 virus. As we are part of a low- and middle-income country, the virus hit hard the country and still impact us more than others economically, socially. But because many shops had to be closed and many employers had to pull (out their) workers, unemployment, as like in many other countries in the world, an indirect impact of that is more shortage in security, because in daily normal lives, it already existed much in the country.

Concerning medical care delivery, we just need to keep in mind that in Madagascar, prior to the coronavirus, there is a lot of lethal disease like malaria, dengue, plague. And then medical care must go on into our bases of centres, which are pillar of our health system, vaccination, care for pregnant woman, care for babies continue. But at the higher levels, like regional hospital or university hospital, there’s more impact because when a hospital department is not overwhelmed, it’s quarantined. Then, only emergency surgeries and care are delivered now in the country.

Last point I would mention is that people are scared to go to the hospital now in the country. That’s why the government spreads the message of preventive measures and for those who get a chronic disease like diabetes, to continue the treatment and control. Thank you.

Laura: Thank you for painting that comprehensive picture for us. Abhishek, I know India has been pretty hard hit by the virus. Could you speak a little bit to the effects on both day-to-day life, but also the delivery of medical care?

Abhishek Sengupta: Sure, Laura. Firstly, a big thank you to everyone for joining us, and welcome. I hope the conversations today are insightful.

Laura, coming back to your question, I think India has been very significantly hit. What we realise now is that the virus actually came to India a bit later than when it came to other parts of the world. India did a very good job initially. It closed down its border, so international flights were cancelled, and the country went into a lockdown, and that the lockdown continued for pretty much two months, some parts even more than that.

The lockdown was implemented pretty strictly and very seriously. There was no movement within the country, there was no movement even within cities. People did follow it, and to some extent also forced to follow it because there was a huge amount of fines imposed. There were district officials and police officials who were making sure that lockdown was being followed.

I think throughout the lockdown, we didn’t see a huge spike in the number of cases, but since things started opening up, and the government was forced to open things up because of keeping economic intentions in mind because people were losing jobs, business were getting shut down. It had a very adverse effect on the economy.

Since the lockdown has opened up, there has been a huge spike in the number of cases. Currently, we have close to 30,000 cases a day, new cases. India is, in the next few days, going to hit about a million cases. We have 936,000 cases currently total.

A good thing is that India being a big country, of course a very highly populated country, but also a big country, we can’t look at India as a whole. You have to look at the regional disparities within the country. If you break down the numbers, what we realise is that out of all the cases, close to 83% of the active cases today, are actually concentrated only in nine states, which again is a good thing because you can – state governments are now putting very regionalised lockdowns at different states and cities to control the spread of the virus, as well as movement of people.

In terms of its impact on health system, of course being a late-development country, and given that India did not have a very robust health system even when it comes to primary health care, the impact has been significant. Like Howard was saying, it’s actually not just access to COVID patients for treatment, but also this has affected other patients, patients with other ailments including older population, as well as maternal and child health service delivery because people are scared to go to hospitals.

Two, actually, even doctors are scared in many hospitals. You read about it in newspapers, as well as we are hearing it from our medical volunteers, that a lot of times doctors are scared to even admit patients who have even the slightest of symptoms. They might not have COVID, actually.

That has created a bit of a havoc. The government currently is trying its best to handle the overwhelming need within the healthcare system. There are stadiums which have been converted into COVID wards and quarantine facilities. The government has taken up a lot of the private hospitals, as well as a lot of hotels have been taken up and converted into hospitals.

Indian railways have been supportive, and railway coaches have been converted into quarantine centres. There’s a lot of innovative thinking, and the government has done a really good job. Again, you have to look at it regionally because in India, health is a state subject. Different governments and different states are able to formulate their policy. Of course, there’s a directive from the central government.

I think overall, the situation with regards to the numbers, still is an upward trend if you look at the whole country. Of course, in the next few weeks, there is no chances of it plateauing or even coming down, but there is some hope if you bring down the numbers and look at it regionally.

I think currently, the government is prepared with the current caseload of COVID, but also slowly preparing for the worst, which is if the numbers exponentially start going up. I think it’s a new reality that we all are learning to live with. Like Howard was saying, one of the biggest challenges have been people with other ailments, who are not able to access health systems just because either they are scared, or even hospitals are not welcoming to these patients.

We hope that, socially, as we accept this as a new reality, I think people’s health-seeking behaviours are also influenced. Those are some challenges that, as a country, we can overcome.

Laura: I think that’s a great point. Howard, you spoke about the fear that people are having from going into medical centres. Could you talk a little bit more about what led to Operation Smile Madagascar’s decision to pause the delivery of surgical care?

Howard: Thanks for the question, Laura. First of all, the main factor is COVID-19 and its impact. Safety I think is the key word. We should maintain as much for patients as our volunteers. In one hand, we expected that there were partner hospitals where we usually do international missions will receive COVID-19 patients in the beginning, which is the case now in the country. In the other hand, there is a lot of people interacting during international missions. For example, just to show you, during our last mission here in Madagascar on March, we had around 450 patients, then you can easily imagine that it’s not feasible according to the actual situation in the country.

Secondly, a borders problem — it’s a big problem because, since the beginning of the pandemic, our government had to close all borders like all the countries. Most of our international volunteers are from various places in the world, and due to COVID-19, our borders closed as I said. Also, we don’t have enough credentialed local volunteers here to conduct a local mission in Madagascar, then it’s a big problem and the third factor in our decision to pause surgery too.

Another factor that I want to mention is that some patients are from very remote places in Madagascar and would not be able to join the mission site. In the country, some regions are under lockdown, as I said, and which means some roads are totally or partially blocked.

Laura: Is there other factors that your team in India considered pretty similar, Abhishek?

Abhishek: Yes, I think firstly, it was a bummer that we had to suddenly pause all our programmes because as you know, we had just come out of a big mission in Durgapur, where we have a centre. We had just finished up a big international mission where we did over 130 surgeries. And we actually celebrated 1,000 surgeries in Durgapur, which again was a big thing for us because Durgapur, being a pretty small town, being able to mount a centre there and doing 1,000 surgeries, we celebrated it. We had invited people from the local government, and there was a bit of sound and fury around that.

Then, right after the mission, COVID started impacting us. The primary reason to take that decision would be – the last surgery we did at the Durgapur centre was on the 22nd of March, and the country went into a lockdown on the 24th. The lockdown was announced on 23rd. We actually took a decision to stop surgeries right before the lockdown was announced.

For us, the biggest point of discussion that we had at that point of time was, one, patient safety and, second, volunteer safety. That is what we championed in Operation Smile, and that is something that we would never compromise. Whether it’s in our quality of surgery, the kind of services that we are delivering or any other external influence that might impact our ability to deliver services and quality treatment.

We realised that, although at that point of time, there were no cases in West Bengal, there were no cases in Durgapur. Actually, wherever we run programmes, there weren’t any cases, but we still realised that it’s not long that it’s going to hit us, even in these small towns and in the cities that we are working in.

We decided to stop programmes. Then just after a couple of days, we realised that it’s also a government mandate. Of course, we had to follow that. Like I was saying, the country went into a lockdown, elective surgeries were stopped in hospitals. Of course, for us, at that point of time, there was no question about not listening to what the government was saying.

Then truth be told, when we stopped surgeries, in all honesty, none of us could comprehend that this is how it would shape, that this is the shape this would take. We literally thought that it’s going to be like 10 days, 20 days, maybe a month and then we are going to start, then we are going to resume programmes. That’s how we conveyed the message to our patients as well.

At the centre, we have a list of patients waiting for surgery. We pushed them and we said, “Don’t worry. You are supposed to get surgery on 29th of March, we’ll get back to you on 1st of May.” Just push them by one month. Then slowly it dawned upon us that that’s not the case, and then we actually had to call up our patients and tell them that why we are not able to open the centre. There was a lot of logistics around that as well.

Currently, we have a lot of our patients calling us because kids who were 6 months old, they are now 9 months old. Kids who were 2 years old, just developing speech therapy, need for a palate surgery, are now 2 years and three months older. Again, it’s a difficult reality. We know that patients are waiting, and we are, of course, committed to try to get back as soon as possible to ensure that we provide them access to surgery. Of course, the primary and the most important thing we will keep in mind is safety of our patients, safety of our volunteers and our staff.

Laura: Thank you, Abhishek. The topic of this conversation, and what we’re about to dive into, is really both of your team’s commitment to going the extra mile. Although we can’t provide surgery, you guys have both come up with really innovative ways that we can help in our communities, and also help the patients that are waiting. Abhishek, could you speak a little bit about what your team has done to provide food and relief items to families and migrant workers in India?

Abhishek: Yes, absolutely. We are very proud of what we have done, firstly, because something that was off the beaten track, if I can say that, because it’s not something that we generally do in our normal course of work. Also, under the circumstances in which we have delivered this in Bombay, it’s pretty much exceptional.

Once we shut down our programmes, within a couple of weeks, we realised that, one, this is going to stay, and two, our teams were there and we wanted to help people. One way was to collaborate with hospitals and provide them with PPE, get our volunteers to help supporting as frontline workers in COVID wards and all of that, but then we realised that there were already people doing that. Plus, at that point of time, there was a huge shortage of PPE, so even for us to buy, it was difficult.

Then we realised that because of the lockdown, there was another challenge. India, as you would know, has more than 4.5 million migrant workers. These are people who come from small villages to smaller towns or bigger cities in search of jobs. All of them were working in the informal sector. They would work at restaurants, pubs, bars, factories, small businesses. Most of them are daily wage earners. Depending on the number of hours they worked a day, they would get paid at the end of the day. That’s how they sustain.

Also what happens is, these factories, these restaurants, these businesses where they work, that’s where they stay. At night, they would sleep at the factory. At night, they would sleep at the restaurant once it’s closed down. Because of the lockdown, suddenly all these businesses were shut. Suddenly, none of these people were being paid. They lost their jobs overnight, literally overnight. Most of them also didn’t have a place to stay because, like I was saying, they were still living in the factories itself, or in the place where they work, or even if they were paying rent in a big city, once their daily income is gone, they were not able to pay that rent. There were no trains to go back home. There were no buses to go back home. You would have seen that for about a month, you would see migrant workers literally walk for 7 days, 12 days, 14 days on the highways trying to go back home because there were no transport. There was no other way for them to go back home.

The other problem that happened is because these are people who pretty much live on a day-to-day basis, they don’t have any savings. Once they lost their jobs, there were a huge number of people who were actually living hungry, literally they didn’t have money to have two meals a day, leave aside three meals a day. We saw this as a problem, and we decided that that is a space we want to work in. Of course, we believe that it is our responsibility to stand beside communities even in times of hardship, especially in times of hardship.

We picked up two cities where we run centres. One is a very small town; another is a bigger city. One is Durgapur; the other one is Bombay. Bombay, as everyone knows, has the most number of migrant workers in India coming from different parts of (the country). We started giving out food supplies to them. Overall, in about four weeks, we were able to support about 2,500 families, providing them food supplies. In each packet, there would be rice, potatoes, lentils or cooking oil, enough for about 20 days for each family. Then, of course, we also gave some hygiene kits, which is masks, sanitisers, soaps, buckets and mugs, because we felt that is important in these times.

I think it was taken very well. And the idea was that, again, we knew from the beginning that we will not be able to support them for a long time, but again, the idea was to make sure they have enough support to get through these hard times when there is a lockdown going on. Then, of course, the hope is that once the economy opens up, they will go back to their jobs, start earning a salary and they wouldn’t need this support.

Laura: Can you talk a little bit about how we were able to utilise some of our existing partnerships to help us pivot in this direction of something that we’ve never done before in India?

Abhishek: Absolutely. I think one of our primary partners was the Inga Health Foundation. We partner in a lot of programmes with them. Everything that we did in Bombay was basically done in partnership with Inga. When we’re running centres in these two places, in Bombay and Durgapur, we actually already have existing partnerships with the local government, that’s the district magistrate, that’s the police as well as with a lot of NGOs in these areas because we do a lot of community awareness programmes through them.

This time when we wanted to do this, we went to them with a very different approach because they’re not used to hearing Operation Smile does this, but we told them that we wanted to support communities and provide food supplies. I think everyone was very welcoming. I must say that we could not have done it without the help of our partners because we really needed hands and feet on the ground. Of course, we had our teams, like you can see in this photograph, literally packing, as well as distributing supplies. Of course, we needed a lot more people, so we got volunteers from our partner organisers.

The other thing is, we got a huge amount of support from the local government in both these places. Because just imagine this was a time when there was a lockdown. Even our teams in these areas couldn’t leave their homes without the permission from the government. The government was kind enough to actually allow our people mobility. They were given passes so they could go purchase supplies, pack them, and then distribute them, and of course, a lot of support was provided from the local administration.

Then we went and distribute them, because just imagine going into a community with food for about 200 people, there is always overcrowding, and again, some things that we had to avoid at this time is overcrowding because we wanted to maintain social distancing. We wanted to make sure that enough precaution actually is being taken, and that’s where we got a lot of help from the local administration, as well as our partners.

Laura: Wonderful. Thank you for describing that for us. Now switching gears to Madagascar. Howard, your team has literally gone the extra mile by creating the Extra S’Mile Campaign. Could you talk a little bit more about what motivated that pivot from the foundation where you work?

Howard: Yes, sure, Laura. First, we really thank God we were able to make the Marh mission, but knowing that we won’t be able to make a mission for the rest of this year, we were so sad. As Abhishek said, the people here too are in a very bad condition, especially with food conditions. They may have just have one meal a day. They are living under $2 per day, too. Then the idea of going towards the patients instead of them coming to us came. It’s spreading miles to bring smiles. That’s how the Madagascar team gave birth to Extra S’Mile programme.

Laura: One branch of that campaign is called Extra S’Mile Nutrition. Similar too in India, your team is giving relief and food packs to families. Why is it so important that the families that we serve are receiving these essential items during this time?

Howard: Yes. As I said, it was so important for us to help poor families because they are in a very bad condition, as I said. They were so committed to bring them these food supplies because all of them live at the region under lockdown. That was our main criteria, bringing food supplies for those who were under lockdown, for those who can’t work, for those who can’t go out, for those who were under quarantine. The Smile Nutri-pack, that was the name of the food supplies, was supposed to last 15 days by delivering around 2,500 kilo calories per day.

In addition, we gave them reading material and flyers on healthy diet. We would like to show them how to eat properly, what to eat exactly to reinforce the immune system which will help them to fight disease more easily. Extra S’Mile Nutrition had two phases. We were able to visit six regions in Madagascar during phase one and phase two. We distributed Smile Nutri-packs to 532 patients and their families. Also, we were able to distribute 26 Smile Nuti-packs to 26 malnourished patients. Among them all, we are not forgetting our volunteers. We gave food supplies to 120 of them.

What is in Smile Nutri-packs? It’s quite similar with what Abhishek gave in India. We gave them 25 kilogram of rice, three kilograms of legumes, two concentrated milks, two bottles of cooking oil, two kilogram of sugar, one bar of soap, and, of course, five washable masks.

I just want to bring precision on what we’ve done for malnourished patients. We also gave them adaptive formula, therapeutic food. This to continue our existing nutrition programme here in the country because normally, in normal times, we cover all malnourished patients in the nutrition food camp for two days, but since it’s impossible due to the situation, we travel to each of their places.

In addition of that, for volunteers, we added N95 masks and sanitisers, as most of them are working in the hospital, on the frontlines against the COVID-19 war.

Also, there’s another aspect of extra malnutrition. We made the partnership with a local institution, National Office of Nutrition, here in Madagascar. Our main focus area was on the east region named Moramanga, because we heard from them that there’s a lot of people who are under quarantine, and they just threatened the government to go out because they needed food; they needed enough to eat. They were just hungry. That’s why we made this partnership with National Office of Nutrition by giving them these donations. And with local authorities’ help, we were able to give 30 kilograms of rice, two barrels of cooking oil and 12 kilograms of legumes to 145 households quarantined at home in Moramanga. It has the expected impact because number of cases in this region continue to decrease right now and that is our goal to contain the spread of this terrible COVID-19 virus.

Laura: That’s incredible. Your team should be insanely proud of the work you’ve been able to achieve and the hard work of travelling across Madagascar to deliver this type of relief. I understand that there are other focus areas of the campaign targeting hospitals, public awareness and then education-based webinars. Could you talk about some of the other focus areas?

Howard: Yes, as you said, Laura, we had three components of this Extra S’Miles programme: Extra S’Miles Hospitals, Extra S’Miles Awareness, and Extra S’Miles Webinar. For Extra S’Miles Hospitals, we gave PPE for health workers, professionals, and because most of them are testing positive now, and we wanted to make a difference by giving PPE and disinfecting products to help them facing this COVID-19 pandemic.

Also, Extra S’Miles Awareness, who made a partnership with another organisation, named MedAir, and they are working on another epicentre … They are spreading direct messages about COVID-19 to the larger public. But not only that, they are also acting on other several areas of prevention and control of infection, like agent training, disinfecting public places and those facilities, distribution of wash kits and PPE donation to all facilities.

The last component is Extra S’Miles Webinar. We are sharing to local partners and volunteers, most of them, mostly medical volunteers, relevant webinar concerning COVID-19 from Operation Smile (Global Headquarters).

Laura: Anecdotally, what have you been hearing from either the patients, the families, the volunteers, or the partners who we’ve been able to help with this campaign? What does it mean to them?

Howard: Yes, that’s a good question. It was a great mission because we mostly saw grateful eyes and smiling for those patients who received food supplies. They were so happy. We wish, of course, we could do more for more patients, but what we got from (Operation Smile Global Headquarters) and local donors here in Madagascar, they were a very big part of this project, (and they helped people who are) already very vulnerable. We did our best to provide the necessaries for those who mostly needed it. To resume, we saw happiness everywhere we travelled. Thank you.

Laura: Abhishek, you spoke about a lot of the obstacles that the country is facing in response to the virus, but could you speak about some of the obstacles your team is either currently trying to overcome or has already overcome in providing aid to these families, community members and then anyone else that you’re able to help?

Abhishek: Yes, I think initially it was a bit of a challenge for us because, first week, there had to be a big mind shift from where we are supposed to and condition to function because it was over and about what we are used to doing. There is some logistical challenges, especially in Durgapur. Mumbai was a bigger city so things were available, but in Durgapur, once the lockdown was in place, even supply chains were affected. Under those circumstances, trying to buy supplies, rice, potatoes, cooking oil as well as lentil in massive quantities was a challenge, and it took us a bit of time. It took us about a week to actually be able to procure things in a larger quantity, because by then, things were also getting streamlined by the day and the government also realised that that’s a challenge and supply chains were being streamlined.

The second was, like I was mentioning, that the first couple of times when we tried to do this I think there was a bit of overcrowding because we did not have much of an idea about that. But then, later on, we had understood so we’d send in advance teams, give out tokens first, make sure people are properly lined up and make circles and make sure they’re standing three metres apart from each other to ensure the social distancing norms.

I think those were the challenges it was just like there wasn’t anything extraordinary, but it was more of trying to do something for the first time. I wouldn’t call them challenges, but they were actually learnings. I think we were able to adapt fast and, of course, ensure that those issues were taken care of within the first week or first couple of weeks.

Laura: Howard, how about for your team? Did you have obstacles you had to overcome or did you turn them into learnings as well?

Howard: Yes, during this mission, phase one and phase two, of Extra S’Mile mission we had no major obstacles. At the beginning, the authorisation to proceed was a bit hard to get from the COVID-19 operational command, but with precious inward support, it went smooth. Also, I’d say that confirming the beneficiary patients from our database by call was a challenge too because we had to call them in advance to tell them the place, the date and the exact hour of distribution to tell them what to do. As Abhishek said, preventive measures like how to line-up, how many patients should come at this time, at this time but we’ve agreed, and through the incredible work of our patient coordinators, we were able to join and manage those 532 patients as well.

Laura: How has your team been able to stay in touch with the patients during this time?

Howard: Here in Madagascar, we have these patient advocates disseminated in different places. They are mainly parents of patients in the past. They are our main contact point in the country. They are responsible too of local awareness on cleft,  because they used to being in touch with patients. They are from the regions. Patients are not afraid of them. They are also the first responsible for follow-up of malnourished patients. Generally, when some patients have problems here, patient advocates are reporting to our patient coordinators and they are searching for a way to solve or to help those patients as much as we can do.

Also, through our (Ministry of Health) partnership, based in health centres, are a great help for us. For example, on following-up patients’ weight, it’s an important nutritional indicator, especially for our malnourished patients, because we have to remember that during this Extra S’Miles mission, we had 26 malnourished patients. These centres are also taking part of awareness by gathering newborn babies with cleft lip or cleft palate.

Laura: Abhishek, at the top of the call you talked about how you guys have been staying in touch with patients. Could you just elaborate on that a little bit more for us?

Abhishek: Yes. We have been in touch with patients. That’s one of the most critical things and that’s one of the most high-priority things for us because of two reasons. One is, it’s very important because there are a lot of patients whose treatment have been planned in the sense that they are either going through a long process of orthodontic treatment, or they are going through a process of dental treatment or speech or their surgeries have been lined up. That is the reason. There’s a lot of rescheduling happening. We keep pushing them.

In terms of the orthodontic patients, we’ve actually arranged phone calls with our orthodontist with some of these patients, because a few of them also have some fixtures that needs to be loosened, tightened and adjusted. That cannot be done without clinicians’ or orthodontists’ intervention. Our patient coordinators have been in touch with our patients, similar to what Howard mentioned. We also have patient coordinators across the countries in the different areas in which we work. One is, of course, planning, continuing to stay in touch to be able to keep their treatment plan in order. That’s one.

The second, I feel it is also important because unless we are in touch with patients, once we can get back, it’s going to again take us a long time to go and build rapport and find them. I think it’s also critical depth. There’s a couple of other things that we’re doing, which I think is very interesting.

Which is basically trying to make use of this time because our patient coordinators in their normal life are always travelling. They’re travelling 20 days, 28 days a month and they are normally working 10, 12 hours a day. We wouldn’t have this time, but we have some downtime. We are using this time to conduct the patient assessment programme. What we are doing is we are calling 1,200 patients only about … the last couple of years and trying to understand, one, their health-seeking behaviour, two, their need and three, what are preventing them or was preventing them to get access to surgery?

Let me give you an example. We are finding some very interesting things there. For example, Vijayawada is one of our sites where we keep going back every year. We have been doing that for the last five to six years. We don’t have a centre there. We go there every year, we do a mission and we come back. What we’re hearing now through our patient assessment which is just midway, is patients in Vijayawada, a lot of them, about 120 patients are saying that they need speech therapy.

We want to use this knowledge to redesign our programmes. What does that mean? I’m already starting to think about maybe a small speech clinic in Vijayawada. We don’t have to mount a full-fledged centre because that’s expensive. It’s difficult to mount, but a small speech clinic is not difficult. We’re already thinking of mounting that in partnership with the hospital when we work in Vijayawada and provide this comprehensive and complete care to patients whom we are taking care on missions.

I think it’s been very interesting, this patient assessment there are a lot of – it’s basically a very bottom-up approach to programmes. It’s not about the deciding which patient needs surgery, it’s what kind of treatment those patients need and then going with it. It’s more of patients telling us what they need.

In a way, I also look at it as patients demanding certain services. I think this whole conversation is going to help us design more targeted programmes which will address these patients’ needs. Again, basically trying to take advantage of the downtime of our patient coordinators who are always running around to get into understanding our patients a little bit.

Laura: That’s so important. I think we’re seeing that in a lot of our foundations. Howard, is your team taking similar steps to really improve the way you’re able to deliver cleft care once it’s safe to do so?

Howard: For sure. I think that Abhishek, India and Operation Smile in Madagascar are trying to take the same pathway now simply because we are also searching a way to develop the comprehensive cleft care in the country. We are working on speech, dental, on psychosocial programmes. We are trying to redefine the whole programme. We’re designing now, but we have nothing structured yet. But we are trying to find a way to deliver the comprehensive cleft care. As I said, we don’t have nothing structured but we want to do it with the safest way possible as we can do with the best resource we have like equipment, human resources and infrastructure.

Talking about resuming surgery: resuming surgery is not our top priority. Our motto is, as I said, the safety of our volunteers and our patients as we don’t have an Operation Smile centre here in Madagascar, all our operational hospital partners are not safe for surgery yet. Many health professionals working too are testing positive.

Unfortunately, most of our volunteers who are credentialed are testing positive or presenting symptoms or are at a higher risk in the hospital because they are in the frontline. We are not ready to start surgery anytime soon. I want to mention again what I’ve said with thousands of cleft cases in the world, we have always focused our time and our energy to organise more and more internal missions, but our main focus this new fiscal year is to try to develop how a comprehensive cleft care should look like in Madagascar.

Laura: Thank you. Before we kick over to audience Q&A portion, Abhishek, did you want to add anything to that, your next steps for resuming care and surgery?

Abhishek: I think the thinking is very similar to Howard what you mentioned because safety is paramount. To me, I think there is two things to consider. One is safety of our patients, of our volunteers, of our staff. The second thing is also the way I’m looking at it is also sustainability, because we don’t want to open up a centre and then again have to close it down after three months because there is a sudden spike in numbers, or because we don’t have the available resources, or maybe there’s not a sudden spike in numbers, but there’s some restrictions on the government because we are not able to move patients. There are a lot of things that we are considering.

First and foremost, like I mentioned, is when you look at India, you have to break down the numbers regionally. For us, that is the most important part because you can’t look at India as a whole, we have to look at it regionally. Places where the curve has started to flatten or there is a plateau, or things are going down, those are the areas where we’re going to start operating first.

A lot of things to consider around that, of course, it’s a given that all necessary precautions in terms of PPE, as well as other protection devices, as well as social distance measures, they will need to be followed. Operation Smile has actually developed a fantastic document. It’s guidelines for foundations to restart programmes, which talks about exactly what’s kind of the PPE we need, how much quantity we need. Of course, it goes without saying that we will be following that, and that needs to be followed.

I think a couple of other things that I have in mind is, one, is mobility and movement of patients, which is very critical because when we start a centre, we are going to have patients, we need to have patients come on a steady flow. Unless public transportation is open and safe for patients, I believe we wouldn’t be able to go back and open up a centre or run a programme.

Second is even if we are bringing patients, which is what we’ve done many times in the past, we may now put them in vans and cars and bring them in. Is there a government restriction of mobility between one district to another district, one town to another town? Those are some things we have to keep in mind.

The third is testing, because India has increased, ramped up its testing capacity quite a bit. Still again, one of the things that we have to do and we want to do is make sure any kid that’s going on the table is COVID negative, so we will be doing a COVID test on them. Currently, the way it works, again, there’s a huge regional disparity on the number of testing and the ability of testing. Kits have been in shortage for a long time in the country. That’s why it’s highly regulated by the government. Again, we are waiting for testing to become a little easier.

Nowadays, results take about 40 to 48 hours, maybe sometimes even 50, 60 hours, too. Again, trying to wait and see, because in some places, the timeline has already shortened, some places it’s already within 24 hours, 12 hours, and you are getting a result. So, trying to figure out all of these different elements before we are able to get back to work. Currently, we are actually looking at starting the centre in Bangalore sometime in August. We took a decision on it last week, but then again, in the last seven days, we are seeing there’s a bit of a spike in the numbers in Bangalore. Actually, again, it’s gone back into consideration.

The way I see is I think that West Bengal, Bangalore, these are going to be some of the places where we’ll start first. But Bangalore is a small centre where we do about 20, 25 (surgeries) a month. There’s not a lot of overcrowding. Durgapur is a bigger centre. But of course, once we get back, it’s not going to be doing huge numbers for the first couple of months. It’s going to be starting slow, getting used to the new reality is the way I’m thinking, because right from our patients to our volunteers, everyone has to get used to it. It’s just a new way of living, I think.

Get there and then slowly increase the numbers at centres. In terms of missions, like Howard mentioned, of course, we are not looking at any international missions this year.

Even next year, maybe toward the financial year, May, June, if possible, we’ll look at the international missions. We are looking at running some international missions in the second quarter of next year. Again, a lot of ifs and buts, it will depend on how things step up.

Laura: Great. Thank you so much. Now we’re going to kick it over to John for our last few minutes here to answer some of the questions from the audience.

Audience Q&A

John: Yes, thanks. We have a question coming from Salma. Howard, I’ll direct this to you. She’s wondering as a high school student, she’s interested in how she can contribute and help amidst the COVID outbreak. What advice would you have for her as a high school student?

Howard: Excuse me, can you repeat the question, please?

John: Sure. The question is, as a high school student, I’m very interested in how you think we can help and contribute amidst the COVID outbreak.

Howard: Okay. As a high school student, I think that what she can do now – she’s from where, please, John?

John: I’m not sure. I’m sorry.

Howard: Okay. As a high school student, first, all she can do is making sure –

John: UAE.

Howard: Where?

John: United Arab Emirates.

Howard: Oh, okay. As a high school student, I recommend her for this COVID-19 outbreak to respect all preventive measures first, because it’s the most important now. Because like that, she can contain the spread of the virus in her country and in her house. Also, getting all information she can (get) and spread it around her, of course, the right message to the right person because this virus is going to change our mentality. There’s a lot of things that we have to change. Of course, there’s a lot of things that we need to consider for the future, and all I can say now is, as a high school student, to respect all preventive measures.

John: Absolutely and Salma also feel free to reach out to Operation Smile UAE and you can inquire on their student programmes and see if there’s any initiatives that they have running as well. It could be a great way to get involved.

Okay, our next question is for Abhishek, and it comes from Linda. She also says this is Linda Bucher, Abhishek, someone that I know you know well, so she wishes you all the best and hopes your family is healthy and safe. You alluded to it a little bit. Is there any type of telehealth activities going on in India or Madagascar? With respect to speech therapy, nutritional teaching, etc.

Abhishek: Okay. Firstly, hello, Linda, hope you are well, and you’re staying safe. Coming to the question, so see there’s not a lot of telehealth activities going on, but it’s more of patient assessment piece as well as trying to staying in touch with patients and provide them the right kind of guidance through those and help them get through this till we get back. In India, there isn’t. Of course, there’s some consultation going on need-to basis in the sense like I was mentioning in terms of the orthodontic treatment.

There are people who already have certain fixtures, and they need to twist this by one inch or one rotation every two weeks, every three weeks. Those are things that we are following up on and we are doing. Other than that, we are in touch with patients through the patient assessment piece, as well as talking to them about this schedule for treatment.

But, no, there’s nothing in terms of speech therapy or nutritional teaching over the phone. I know other foundations in Operation Smile are doing it. I know Nicaragua is doing it. Absolutely. Actually, one of the countries that I oversee is doing it, and I know some parts of Russia. Russia is also doing it. They’re doing speech therapy as well as some nutritional counselling over video calls as well as telephones.

In India, unfortunately, we’re not doing it. We did think about it, but somehow, given the available resources, the restrictions of lockdown, we weren’t able to implement it.

I think it’s a great point, and we already have been thinking about it, but I think you just reiterate that maybe as we start to live with these new realities, that is something that we should consider and start developing programmes and all that. Thank you, but currently, we don’t have anything but we will start thinking more seriously about it and maybe have a programme soon.

John: Excellent. Well, again, I just want to thank everybody for inputting your questions. I want to thank our panelists, Howard and Abhishek, for their time today. Thank you guys so much for joining us and sharing your insight with our audience and with the world. It means a lot to us. Yes, on behalf of Laura and I, we’re signing off for this COVID-19 Conversation, and we’ll see everybody next time.

‘I Was Afraid I Was Going to Lose Her’

Becoming a new mother is challenging at the best of times, but Fatima, mother to one-month-old Janat, feared her daughter was about to die. Janat was born with a cleft lip and palate and Fatima not knowing where to turn was overcome with worry.

Janat was losing weight. Every time Fatima tried to feed her, she spluttered and choked on the milk. The hungry cries of her starving daughter broke Fatima’s heart. Janat could only slowly drink three ounces of feed over the course of a day, no-where near enough for a growing child. Each attempt to feed her brought more heartache.

Luckily, Fatima was seen by an Operation Smile dental team who arranged for her and Janat to be transported to our care centre in the city of Oudja. By this time Janat had lost nearly half of her birth weight and medical volunteers immediately identified Janat as at risk of dying.

Experts from the team were able to feed Janat with a special feeding plate. Rather than choking, with milk spilling from her nose, Janat hungrily drank three ounces with ease. ‘I was so happy. I was so relieved,’ said Fatima, ‘…I’ve never seen kind hearts like you before.’ Words that travel through our volunteers to you, as without you Janat would very likely have died.

Operation Smile will continue to support Fatima and Janat. Able to get the milk she needs to survive, Fatima will now be able to build up Janat’s strength for surgery to correct her cleft conditions. Although their journey is not over yet, we look forward to Janat growing into a happy and healthy child.

Overcoming Nutritional Barriers to Surgery in Ghana

Two-year-old Jocelyn during Operations Smile's 2017 medical mission in Koforidua, Ghana. Photo: Zute Lightfoot.
Two-year-old Jocelyn during Operations Smile's 2017 medical mission in Koforidua, Ghana. Photo: Zute Lightfoot.

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.

For patients like Jocelyn, widespread poverty affecting areas across Ghana presents challenges and a host of barriers that stand between them and a brighter future after surgery. Some of these barriers can also be the difference between life and death.

Malnutrition remains one of the most significant obstacles to receiving care, affecting children with cleft conditions, especially babies with cleft palate, in the early developmental stages of their lives.

Without timely medical intervention, patients confront challenges with breastfeeding, struggle to receive proper nourishment when it’s most critical and become more susceptible to infections and diseases.

“Challenges people in Ghana are facing: no access to nutritious foods, foods are too expensive,” said volunteer nutritionist Dede Kwadjo.

Volunteer nutritionist Dede Kwadjo poses for a photo at the patient shelter where she has been consulting with mothers of babies born with cleft conditions. Photo: Zute Lightfoot.

Due to the rate of Ghanaian children experiencing growth delays and being moderately to severely undernourished standing at a staggering 19 percent, improving access to nutrition and educating families is crucial.

With an increased risk and probability of complications during surgery, many hopeful families who arrive with their children to Operation Smile medical missions leave disappointed and upset after medical volunteers deemed their baby too unhealthy to receive surgical care.

And in Ghana, a country known for having widespread and deeply rooted social stigma surrounding cleft, many children endure lives filled with pain, living in a world of isolation and being fearful of harassment from peers, members of their communities and, sometimes, even their own families.

This is what Cynthia hoped to protect Jocelyn from when she made the choice to help her future adoptive daughter.

She never expected that her decision to pause at a bus stop and speak with the father of a child living with an unrepaired cleft lip would save a life let alone take her on a journey toward motherhood.

Jocelyn pictured with adoptive mother, Cynthia. Photo: Zute Lightfoot.

Hoping to help him find a solution for his 2-year-old daughter, Jocelyn, Cynthia told the father about Operation Smile Ghana and the surgical care it provides at no cost to families.

Cynthia soon learned that Jocelyn’s mother had abandoned the family, leaving Jocelyn in the care of her dad. Over time, she also began to notice that he didn’t seem to make his daughter’s needs a priority, and Cynthia became more troubled and suspicious.

To make sure that he followed through for the care of his daughter, Cynthia travelled with the family to the 2017 local medical mission in Koforidua. But after performing a comprehensive health evaluation, medical volunteers determined that it wasn’t safe for Jocelyn to receive surgery: She was too underweight and showed signs of malnutrition.

“With nutrition, I always say, ‘If someone isn’t well nourished, a lot of things don’t go well,’” Dede said. “Making sure that someone is nutritionally adequate is a basis for good living.”

After Jocelyn was admitted for a five-day stay in the paediatric ward during the mission, Cynthia refused to leave her side.

Cynthia was thrilled to learn that Jocelyn had been enrolled into Operation Smile Ghana’s nutrition programme. But her excitement was short lived once she was told that Jocelyn had missed the first – and second – month of the programme.

Repeatedly, the Operation Smile Ghana team called Jocelyn’s home, using every resource they had to reach the family and make sure Jocelyn received the care she desperately needed.

Cynthia knew the kind of life Jocelyn could have if she received surgery. But she also suspected what her future held if her health didn’t improve and she wasn’t cleared for surgery.

Following numerous failed attempts at trying to convince Jocelyn’s father to bring her to the site of nutrition programme, Cynthia’s initial worries and fears about Jocelyn’s health and well-being were realised, and it became clear that she needed to step in.

Assured that Jocelyn wouldn’t go back into the care of her birth mother, the father agreed that Cynthia could have sole custody and become the person in charge of taking over Jocelyn’s care.

It was only after Cynthia offered to become Jocelyn’s primary guardian that her journey back to health – and to receiving free surgery on her cleft lip – truly began.

Photo: Zute Lightfoot.
Photo: Zute Lightfoot.

To help the overwhelming number of children suffering in the country, Operation Smile Ghana’s nutrition programme is conducted year-round in five regions across the country. The programme offers ongoing educational support and monthly intervention assessments to track patients’ development.

Ready-to-use therapeutic food (RUTF), a nutritive peanut paste; formula, and cereal mixes are given to patients whose nutritional deficiencies prevented them from passing their comprehensive health evaluation. Since 2015, Operation Smile has provided RUTF to malnourished patients living in the country. And today, during the COVID-19 pandemic, this support is critically needed. While surgeries are postponed, our team in Ghana is distributing RUTF to patients who need it so they can continue growing strong and healthy.

Dede Kwadjo speaks with Aba, mother of 11-month-old Moses, during screening for Operation Smile Ghana's first local mission in Koforidua. Photo: Zute Lightfoot.

For Dede, the individual education and empowerment consultations she offers to families are just as important as the care she delivers to the children.

“We train our mothers to use what they have to create nutritious food for their children. We ask what they have available: fish, beans, banana. Then, we work with them to create a practical solution, teaching them how to help their child,” Dede said.

Eleven-month-old Moses being fed by his mother, Aba, while waiting for patient announcement during an Operation Smile Ghana medical mission. Photo: Zute Lightfoot.
Eleven-month-old Moses being fed by his mother, Aba, while waiting for patient announcement during an Operation Smile Ghana medical mission. Photo: Zute Lightfoot.

Another one of Dede’s patients is Moses.

At the same 2017 local mission conducted by all Ghanaian volunteers, the 9-month-old arrived in dire need of nutritional intervention.

For Aba, Moses’ mother, the personalised counselling and support she received from Dede throughout the nutrition programme constantly motivated her to never give up.

Despite her son’s recurring respiratory infections and low weight, Aba remained committed to the programme and became more hopeful as she began to see positive changes in Moses’ health. It was her perseverance and empowerment from Dede that led to Moses passing his comprehensive health evaluation and receiving cleft lip surgery.

While malnutrition continues to prevent babies and children from undergoing surgery at the ideal time, support from mothers like Aba, education from volunteers like Dede and unrelenting commitment from loving people like Cynthia are forces that can change the course of a child’s future.

“If you can empower somebody with right choices to prevent the person lacking something as basic as getting the right food and the right proportion at the right time, that will go a long way actually help the person to have a better quality of life,” Dede said. “I’m so passionate about it.”

Moses and Aba after his cleft lip surgery. Photo: Zute Lightfoot.

A Born Fighter

Photo: Justin Weiler.

Energetic and talkative, Bui loved preschool.

As he bounced around the playground in his rural Vietnamese community, the 3-year-old paid no mind to his cleft lip while playing ball games and taking turns on the slide.

But whenever young tempers would inevitably flare, Bui’s classmates dealt him cruel reminders of his condition by calling him “sut,” a derogatory term describing someone born with a cleft lip. Bui would react angrily by fighting back, hitting his bullies until they stopped the name-calling.

Incredibly, young Bui never cried in the face of the taunting — a testament to the unconditional love and support of his family. When he was born; his mother, Ai, and father, Luyen, had never seen someone with a cleft lip. To them, it mattered little compared to the joy of welcoming their third child to the family. Ai’s midwife explained it was not unusual for a child to be born with a cleft lip and that surgery was possible to repair it.

While the local clinic provided support on how to feed Bui — he had no trouble breastfeeding, which can be difficult or impossible for many babies born with cleft lip and cleft palate — the family’s lack of financial resources made it impossible for them to afford surgery. Luyen and Ai are subsistence farmers, and the family lives off what they grow.

Photo: Zute Lightfoot.
Photo: Zute Lightfoot.

Their only option for Bui to access care was registering with the local government, which would inform them when a free surgical option became available.

The family was ecstatic when the government agency informed them that Operation Smile was conducting a medical mission in Hanoi — a 2 ½ hour bus ride from from their village. While Ai was unable to make the journey due to the recent birth of her fourth child; Luyen, his mother, My, and Bui’s uncle made the nerve-wracking trip to Hanoi with Bui — each person’s first time in a big city.

At the mission hospital, the family was surprised to see many other families with children like Bui and enjoyed sharing similar experiences in raising a child with a cleft condition. This hopeful atmosphere soon gave way to disappointment. Bui’s patient health screening — a critical step in ensuring safe surgical care for all Operation Smile patients — revealed Bui was running a fever. Considering Bui’s condition and the week’s surgery caseload, this health hazard meant surgery would not be possible until Operation Smile’s next medical mission returned to Hanoi in four months.

Ai, Luyen and Bui made the next trip together; completing the first leg on a motorbike before completing the 100-kilometre trip via bus. Now Ai experienced the anxiety of her first visit to Hanoi, compounded by the tension leading up to her son’s health screening.

Photo: Zute Lightfoot.
Photo: Zute Lightfoot.
Photo: Zute Lightfoot.
Photo: Zute Lightfoot.

This time, Bui was deemed healthy enough to undergo anaesthesia and received his life-changing surgery. His parents were unsure of how their family would react when they saw Bui’s new smile for the first time, but they were ecstatic as they made the journey home.

Photo: Margherita Mirabella.

Six months later, Ai said the family was overjoyed to witness Bui’s new smile, especially his two older sisters. She added that since his surgery, Bui’s overall health improved and that she can now understand him completely when he speaks.

After making a full recovery from his surgery, Bui returned to preschool, which he loves more than ever as a result of his new smile. While he and his friends may still get into the occasional scuffle as young children sometimes do, the bullying and teasing he once endured has come to an end.

As Ai reflected on Bui’s surgery, she said that she was so thankful to the Operation Smile medical volunteers and supporters who forever changed her son’s life.

Photo: Margherita Mirabella.

Drawing Smiles

Anas with an Operation Smile medical volunteer. Photo courtesy of Anas.

Anas grew up believing that the scar on his lip was the result of a fall he’d had as a child – after 14 years, he learned the truth.

When their son was born with a unilateral cleft lip, Anas’ parents were scared and shocked. Neither had ever seen anyone with a cleft before.

Hoping to repair their son’s cleft condition, Anas’ parents took him to a clinic (unaffiliated with Operation Smile) where he received his first operation at 2 months old.

Sadly, the results of the surgery didn’t heal properly, and Anas was left with bad scars and unevenness in his lips.

Fearing that Anas would think his cleft condition was a consequence of God punishing him, Anas’ parents told him that his scars were the result of him falling from the stairs as a child.

So as he grew up, Anas never knew that there were more people just like him, living every day with an untreated cleft condition.

Anas’ parents loved their son. And in their minds, protecting Anas meant sheltering him from the truth.

But even in their efforts to help Anas live the best life possible, his parents couldn’t stop him from enduring years of harmful bullying.

When children at school noticed his scars, Anas would say that he’d cut himself shaving in an attempt to lessen the pain he felt. And when the hurtful comments and ridicule continued, Anas’ response to the cruel treatment would be to make a joke, hoping that laughing with his peers would make the bullying stop.

No matter how hurtful the abuse became, Anas persevered and refused to let it faze him or prevent him from living the life that he wanted.

Anas later admitted that the bullying he endured helped build his character and mould him into the person he is today – someone with the strength and desire to help others.

Anas with long-time Operation Smile Morocco volunteer paediatrician Dr. Najib Jilali in 2013. Photo courtesy of Anas.

It wasn’t until Anas was 14 years old that he learned that his father had been secretly researching medical options.

During his pursuit of finding a solution for his son, Anas’ father discovered Operation Smile Morocco and learned about the safe, life-changing surgeries it provides patients living with cleft conditions.

After hearing about the organisation’s upcoming medical mission, Anas’ father decided that it was finally time to tell his son the truth.

It was in that moment that Anas first learned about his cleft condition.

While travelling to the medical mission with his father, Anas didn’t know what to expect. He understood that the damage from his previous surgery could be repaired at the mission. But what Anas didn’t anticipate was the scene he would witness once he got there.

Hundreds of people just like him had travelled from across the country, carrying with them the hope of receiving surgery from Operation Smile Morocco.

At the mission, Anas felt an immediate connection with many of the patients. But it saddened him to see them hiding their faces and looking down in embarrassment because of their cleft lips.

Determined to make an impact, Anas formed a community by bringing together both Operation Smile Morocco patients and volunteers.

After passing his comprehensive health evaluation and receiving surgery to repair his cleft lip, Anas became inspired to achieve even more for the organisation.

Anas today. Photo: Ambra Marengo.
Anas today. Photo: Ambra Marengo.

Since his final surgery in 2013, Anas has earned a degree in psychology and volunteered with many organisations, working especially with orphans and children with autism.

Today, he interns at a hospital in addition to working toward becoming a credentialed child life specialist for Operation Smile Morocco.

Putting his psychology studies into practice, Anas touches the lives of patients and their families by helping calm worried parents after their child enters the operating room.

He tells them, “Look at me. I was your son!”

Once they see that Anas’ surgery was successful, anxious parents often immediately relax and try to learn more about his own journey to healing.

Anas says that being on both sides of the mission experience makes him feel like the bridge between the volunteers and patients.

After receiving surgery from Operation Smile Morocco, Anas gained so much more than a new smile.

“Here in Morocco, Operation Smile has a real community who gives a real hope to others. It gives the gift of a new beginning. We all share our humanity, languages, experiences with one another and become like a family.

“For patients, it’s a new beginning. We are giving them confidence and new hope. It is a priceless gift. This is really life changing; it has been for me, and it is for all of Operation Smile’s patients. It’s amazing to have such an organisation in my country. I am happy that, for my part, with the power of words, I can also draw smiles.”

Anas poses for a photo with a young patient during an Operation Smile Morocco mission. Photo courtesy of Anas.

Building the Capacity to Heal

Volunteer surgeon Dr. Tilinde Chokotho speaks with 12-year-old Belita before her surgery during Operation Smile's 2019 mission to Lilongwe, Malawi. Photo: Zute Lightfoot.

Through the actions of dedicated and loyal volunteers who strive to make an impact, Operation Smile Malawi’s goal of increasing local surgical capacity remains at the core of its mission.

Volunteer surgeon Dr. Tilinde Chokotho was first introduced to Operation Smile Malawi during his residency in South Africa. And even after years of collaborating with volunteer medical teams from countries all around the world, Tilinde remains just as passionate about missions in Malawi being driven forward by local volunteers.

And that’s exactly what he witnessed during a 2018 medical mission held in Blantyre, Malawi.

“It is very important and quite significant to have such a strong representation,” Tilinde said. “It means that in the future, we could be pretty much self-sufficient. We could still have a few overseas volunteers to support, but, basically, it should be Malawians treating Malawians.”

Operation Smile invests in increasing the surgical capacity of low- and middle-income countries like Malawi so that it can serve and treat more people living with cleft conditions. As a local foundation, Operation Smile Malawi has worked to encourage and educate local surgeons, doctors and nurses with nearly 50 percent of Malawian volunteers.

Operating room nurse Seleman Badrlie has only been volunteering with Operation Smile since 2016, but he has already transformed many lives through attending 11 medical missions.

After finishing a mission in neighbouring Mozambique, Seleman joined the medical team in Blantyre to help create even more smiles. Back-to-back missions can be exhausting experiences, but for Seleman, it’s the right thing to do for the patients who are waiting.

“I felt like my help and my dedication to the team would be very important. Whatever I have to give to Operation Smile in order to bring smiles to people is OK with me,” Seleman said.

While Seleman is committed to the idea of Malawians driving the Malawi missions, he hopes to continue working with volunteers from around the world.

“It’s important to work on Malawian missions because it helps me gain skills,” he said. “I am always involved in working with the international volunteers, which is so helpful and allows me to learn valuable skills.”

As an organisation with a multidisciplinary approach to care, Operation Smile values its extensive community of volunteers who contribute a wide array of skill sets and professions that are vital to improving the health and dignity of people around the world.

Child life specialists are an integral part of that community.

Operation Smile volunteer psychosocial practitioner Cathy Cheonga, left, and volunteer surgeon Dr. Stefan Rawlins of South Africa meet with 79-year-old Flyness before her cleft surgery. Photo: Zute Lightfoot.

Cathy Cheonga works as a psychosocial practitioner in Malawi and volunteers her skills to assist with the child life team. It was through an awareness campaign that she first heard about Operation Smile and how it strives to deliver exceptional surgery to people where it’s needed most.

As paediatric healthcare professionals, child life specialists help patients and their families understand and cope with the hospital experience. Through therapeutic play and activities, child life specialists ease patients’ fears and anxieties during the mission, helping comfort and soothe them during their time with Operation Smile.

But the event that cemented Cathy’s interest in the organisation’s mission was when the Operation Smile Malawi team visited her office.

“They came to our offices to find out if we had any volunteers who could offer their services. I attended my first mission last year, and the programme was successful, which was why they invited me back this year,” Cathy said.

For Cathy, dedicating her time to attending missions and seeing the lasting impact that she has been able to make for children and their families motivates her to keep going.

“I have enjoyed my experience very much. I actually want to help the parents, as well as the children, to take away their fears: to say to them that this is part of life and everything is going to be OK and then help them transition from fear to hope and peace.”

When it comes to the question of enhancing skills, increasing capacity and building the local foundation, Cathy makes it clear that it’s a pressing concern.

“It’s actually really important because the mindset of many people is that other people have to come to help us, and yet, we are the very people who live with our fellow Malawians here,” Cathy said.

Cathy said that being local allows for a special understanding of the country’s beliefs and cultures, which can be useful in a mission context. She hopes to encourage the youth of Malawi to get involved and volunteer with Operation Smile Malawi so that they, too, can make a life-changing impact.

Through their partnership, Operation Smile U.K. and Operation Smile Malawi work collaboratively to reach a goal of clearing the backlog of patients who need cleft lip and cleft palate surgery in Malawi.

For Tilinde, the goal is possible. And he feels that a key element in achieving it is through increasing local capacity.

“It’s not just about doing the cleft repairs; comprehensive care is the ultimate goal,” he said. “We need training, not just for surgeons, nurses and anaesthesiologists, but other specialties like speech therapy.”

Anaesthesiologists Drs. Paul Phiri of Malawi, top left; Godfrey Phiri of Malawi, top centre; surgeon Dr. Mark Solomon of Kenya, top right; clinical coordinator trainee Courtney Allen of Australia, bottom left; and child life specialist Nicole Zina of the U.K., bottom right, pose with a patient before surgery during Operation Smile's 2018 medical mission in Blantyre, Malawi. Photo: Jasmin Shah.

Exchange for Smiles

Maria smiles wide with her new dentures that she received during Operation Smile Nicaragua's first combined dental and surgical medical mission in March 2019. Photo courtesy of Ryan Cody.
Maria smiles wide with her new dentures that she received during Operation Smile Nicaragua's first combined dental and surgical medical mission in March 2019. Photo courtesy of Ryan Cody.

For 42 years, the only food that Maria could eat was what her two teeth could grind down, and all she could say were the few sounds that she could form with a gap in the roof of her mouth.

Countless meals left on the plate. Countless thoughts left unsaid. For far too long.

Maria was willing to do whatever it took to access the care that she needed. Even a 10-hour journey from her village to the clinic in Managua, Nicaragua, couldn’t deter her.

When she arrived, Operation Smile Nicaragua and the Exchange for Smiles team were ready and eager to help.

During its first-ever combined dental and surgical medical mission in March 2019, Operation Smile Nicaragua teamed up with a cadre of second- and third-year students from the University of North Carolina at Chapel Hill Adams School of Dentistry.

The team not only provides the highest quality of care to their patients, but also mentors the next generation of dentists.

“Our programme employs a direct exchange: one UNC student paired with one Nicaraguan dentist,” said Ryan Cody, a fourth-year UNC dental student and founder of Exchange for Smiles. “At the end of the day, it’s the exchange of knowledge and resources for the gift of a smile.”

Maria’s care exemplifies the special dedication and devotion of this partnership.

By rallying together, the teams treated Maria’s two teeth, which had become infected over the years, and created dentures that would allow her to chew easier, eat better and smile bigger.

“We worked endlessly, Monday through Friday, fabricating dentures. We were nervous that we wouldn’t finish, as the denture fabrication process in the U.S. can take months,” Ryan said. “However, with teamwork, close communication and incredible laboratory support, the moment we were waiting for arrived.”

Photo courtesy of Ryan Cody.

For the first time in many years, Maria got to enjoy her meal – a meat dish with rice – thanks to the dentures that the team had crafted for her.

Ryan said that by the end of the March mission, they had educated and treated 250 more patients just like Maria.

This included a combined 732 dental consultations and procedures on top of the 230 dental patients that the partnership treated during its first Exchange for Smiles mission in March 2018.

Ryan’s Exchange for Smiles journey started when the long-time Operation Smile student volunteer pitched the idea to his mentor Dr. Bill Magee III, the son of Operation Smile Co-Founders Bill Magee and Kathy Magee.

Using the guidance and encouragement he received from the Magee family, Ryan boarded a plane to Nicaragua and presented his proposal to the executive director of Operation Smile Nicaragua. Ryan’s proposal earned him the support of both Operation Smile Nicaragua and UNC.

After fundraising to cover dental equipment, Ryan headed back to the country to purchase equipment as a contribution to the centre and an investment in the programme.

Empowering two teams of students and mentors to treat Maria and more than 500 patients like her was the dream.

The guidance and mentorship of Teresita Pannaci, Operation Smile volunteer dentist from Venezuela who took part in both Exchange for Smiles missions, also served essential roles in the programme’s educational effort.

As a functional orthopaedic maxillary trainer, Teresita teaches fellow volunteers in multiple countries around the world. Her creation of a doll named DAM simulates the experience of a newborn living with cleft palate and helps students practice taking intraoral impressions.

“Exchange Smiles is a wonderful programme with a powerful title,” said Teresita, who’s been a volunteer with Operation Smile since 1993. “In the end, the results exceeded my expectations. The excellent students of UNC, their participation, talent and commitment have favoured the community of Nicaragua.”

Photo courtesy of Ryan Cody.

The cornerstone of the Exchange for Smiles programme is education. The dental school students learn from their mentors, but most importantly, the dental school students are given the opportunity to use what they have learned to teach oral health and hygiene skills to patients and their families.

For second-year UNC dental student and vice president of Exchange for Smiles Celeste Kendrick, the importance of oral hygiene instruction was one of the biggest lessons she took home from the experience.

“Some patients told us they had never been taught that brushing their teeth would help prevent oral disease and pain,” said Celeste. “They thought it was a natural, unavoidable part of life.”

When looking ahead to the next steps of its own education, the Exchange for Smiles experience has helped to calibrate the compass for both Celeste and Ryan.

“After being on a mission with a dental lens, I left slightly overwhelmed, yet motivated, after seeing first-hand how much need there is for dentistry post-surgery,” Celeste said. “This trip helped renew my purpose as a dental student and allowed me to see how important my education truly is.

“There are patients who need help, and though it may not seem like we’re making a difference by studying, they rely on us to do our part and become the best providers we can be.”

Photo courtesy of Ryan Cody.

Open Heart, Open Hands

Patient coordinator Carlos Mahalambe, left, rejoices with the patients and families he accompanied to Operation Smile’s July 2018 Quelimane medical mission. Photo: Zeke du Plessis.

Without its global network of selfless, caring and generous volunteers and staff, Operation Smile simply wouldn’t exist.

The organisation’s free, life-changing cleft surgeries are only made possible by people who unite from all walks of life, devoting their time, energy and compassion to those who need it most.

Through his work as a patient coordinator, Carlos Mahalambe is one of those people.

Driven to help Mozambicans affected by cleft conditions, the 42-year-old then-volunteer was responsible for bringing 18 potential patients to Operation Smile’s July 2018 medical mission held in Quelimane. As a staff member of Operation Smile in Mozambique, his efforts continue to make an immense impact: Carlos successfully recruited 89 patients to attend the August 2019 mission in Nampula.

“I was notified about the (Quelimane) mission, so I got in touch with the team and began advocating for patients,” said Carlos, smiling as he described his work. “I brought four people from my region, and when I arrived, I made some phone calls and connections and found another 14 potential patients in this region.”

Taking a unique path to becoming involved with Operation Smile, Carlos first learned about the organisation and its work in 2013 when he saw a poster at his previous workplace promoting an upcoming medical mission. While he had seen people living with cleft lip and cleft palate before, he never knew that surgery could repair the conditions.

Immediately, he knew that he could help.

“I was working at a lodge in Inhambane when I saw a poster for children needing help, and so I started to volunteer,” said Carlos, who worked as a luxury lodge manager. “I looked for patients, contacted them and dealt with the community to spread the word about recruiting patients.”

At the Quelimane medical mission’s patient village, patient coordinator Carlos Mahalambe was constantly on the move, supporting patients in any way he could. Photo: Zeke du Plessis.

Carlos helped patients and their families receive care from Operation Smile at both of its 2014 medical missions in Mozambique, as well as assisting with the post-operative process.

Soon thereafter, Operation Smile made the tough decision to suspend operations in Mozambique due to political unrest unfolding at that time. By 2017, those tensions had eased, and Operation Smile reached a new agreement with the Mozambican Ministry of Health. Going forward, the partnership will focus on conducting medical missions and providing training and education opportunities for local health professionals.

Even after the three-plus year pause in activity, Carlos was ready to jump back in when Operation Smile came calling again in 2018.

Raising awareness on the community level that cleft conditions are surgically treatable, Carlos uses pamphlets and literature provided by Operation Smile to explain the organisation’s mission when he visits schools and clinics.

“I talk with the people and say, ‘If you know any people who look like this and who need help or can’t afford to go for local surgery, they can please contact me and so I leave my number,’” Carlos said. “When they contact me, I forward them to Operation Smile. They then contact me and send me the scheduled date for the missions. I then let the patients know and I bring them with me.”

At the Quelimane mission’s patient village, Carlos was constantly on the move, supporting patients in any way he could.

“I assist with translating, helping patients with screening, making sure they get food and accommodation,” Carlos said. “If they get sick, I get them to the nurses and also helping them with anything they need.”

To be able to volunteer as a patient advocate throughout the Quelimane mission, Carlos used all of his annual leave, effectively donating that paid time off to the service of patients and their families. Uninterested in receiving praise or recognition for his efforts, he simply told his employer and co-workers at the time that he would be on vacation.

His motivation is as pure as it is profound.

“I feel happy because it’s like I am changing the life of the patient and that makes me very proud,” Carlos said. “I also see people being changed and becoming equal with the rest of the community. That makes me very happy.

“Let us open our hands, let us open our hearts and try to help those in need. It is very important for us to change the lives of others so they can become one with the rest of society.”

Patient coordinator Carlos Mahalambe speaks with Sean Robson of Operation Smile South Africa during the July 2018 Quelimane medical mission. Photo: Zeke du Plessis.

His Grain of Sand

Driving down his typical sales route, Victor Hernández, a Sabritas delivery driver in Chiapas, Mexico, saw something that shook him to his core.

After noticing a group of children playing together near the side of the road, Victor decided to pull his truck over and offer them a simple act of kindness – some bags of free potato chips.

When Victor approached the kids, he came face to face with Irma, a 5-year-old girl who was living with an untreated cleft lip and palate.

Immediately, he began making phone calls to his colleagues to find help for her.

“For me, it was important to act immediately because … the faster I acted, the chances of finding help would be better,” Victor said. “I would be able to get more support. It involves looking here, searching there, talking to this person, talking to that person, and maybe that way I was going to find support faster.”

Sabritas driver Victor Hernández stands in front of his delivery truck in Chiapas, Mexico. Photo: Rohanna Mertens.

It was then that Victor learned that Sabritas is a long-standing corporate partner of Operation Smile Mexico. Sabritas is a subsidiary of PepsiCo as is Lay’s, which partnered with Operation Smile for two successful U.S. campaigns, “Smile with Lay’s,” that raised $1 million in both 2018 and 2019.

And one of his colleagues told him that, at that very moment, Operation Smile was hosting a medical mission just 40 minutes away from Irma’s community.

Victor returned to explain to Irma’s parents that free and safe surgery was possible at the mission.

After Victor carefully explained what they could expect, Irma’s parents agreed to have him pick them up and take them to the mission site two days later.

This was the first time that Irma had ever left her community.

After receiving a comprehensive health evaluation from Operation Smile Mexico medical volunteers, Irma underwent surgery to repair her cleft condition, ensuring a brighter future full of smiles – a future that she always deserved.

“Seeing her finally smile, and with her face completely changed, despite the stitches she had, gave me a pleasant feeling,” Victor said. “It’s really indescribable because we knew then that this girl would have a completely different life.”

Photo: Rohanna Mertens.
Photo: Rohanna Mertens.

Today, Victor continues his advocacy for patients like Irma living with cleft conditions in the communities around his route.

“After little Irma’s operation, I tried to get more involved,” Victor said. “I felt the urge to put up posters in stores, talk to people and see if they knew anyone with the same condition, try to get them to approach me so that I could channel them into the right hands.

“As a human being, I felt so much tenderness and concern to see the needs of these children.”

Victor’s commitment to spreading awareness continued to strengthen, and more people began to see him as a reference for Operation Smile Mexico – as a person they could trust to help.

Eleven-month-old Carlos with his parents, Azucena and Juan Carlos, and Victor at their home in Pueblo Nuevo, Mexico. Photo: Rohanna Mertens.

It was then that Juan Carlos and Azucena approached Victor, hoping that he would help their 11-month-old son, Carlos, who was living with an unrepaired cleft. Victor immediately told them that Operation Smile Mexico was the solution.

Photo: Rohanna Mertens.

“Little Carlos’ parents are young and, like all parents, sometimes they worry a lot about their children,” Victor said. “But I see that they care for him, love him, and they’ve done the impossible by bringing him (to Operation Smile).”

Medical volunteers performed a comprehensive health evaluation on Carlos and determined that he was healthy enough to receive safe surgery and a new smile.

The day that Victor made the decision to help Irma, the course of his life changed forever. And connecting Carlos and his family to Operation Smile only inspired Victor to do more for the people living with cleft in Mexico.

“One’s life changes when one cares about the little people one helps,” Victor said. “I feel really good, and I would like to help more people. I know that, perhaps, what we do is a small thing, just a grain of sand, but with that grain of sand, a life can be changed. And if we just look around us, we can see more people in need.”

Victor with Azucena as she holds Carlos in her arms after surgery during Operation Smile's May 2019 medical mission in Mexico. Photo: Rohanna Mertens.