After 48 Years, A New Future

Domingos has an indomitable spirit with a physique to match: calloused hands, muscled arms and shoulders that look like they could carry the weight of the world.

In a sense, they have. Domingos carried the weight of living with an untreated cleft lip for 48 years.

Making his way to the Operation Smile medical mission site in Quelimane, Mozambique, Domingos didn’t know what to expect. He never knew that surgery could repair his cleft, so all he had was a faint hope that his neighbors and village headman were correct, and that a poster he quickly glimpsed could be the start of a new life.

“My neighbors and headman came to me a month ago and told me about this opportunity. I thought to myself, ‘Is this actually possible?’” Domingos said.

Domingos arrives at Quelimane Provincial Hospital for surgical announcement. Photo: Zeke du Plessis.

Growing up in a small rural community in Mozambique’s Zambesia province, Domingos said that he always felt lost and alone as the only person he or his family knew that was born with a cleft lip. As he spoke about being bullied and judged because of his difference, his eyes reflected the pain that he’s endured over the years.

But Domingos proved to be resilient despite being so cruelly mistreated. The fact that he survived well into adulthood defies incredible odds: Nine out of 10 children who never receive treatment for their cleft conditions die before their 20th birthdays.

Though the social stigma of cleft is severe in Mozambique, Domingos surrounded himself with people who loved and accepted him. He married his wife, and together they raised a son who’s now 20 years old and helps him farm a small piece of land.

Unfortunately, Domingos’ wife passed away several years ago. When he arrived to the mission, he told the volunteers that he had no other family members besides his son.

While his son was unable to miss work to attend the mission, Domingos said that he was sure that his son would be waiting anxiously for updates.

As Domingo’s story spread around the mission’s patient village, he rapidly became well-known and admired by the other patients and family members. Still, Domingos was unsure that his cleft lip could be repaired after living with it for so many years. When a volunteer showed him the before-and-after images of a man of a similar age from Ghana who received cleft lip surgery, he exclaimed, “It’s not possible!”

After Operation Smile medical volunteers determined that Domingos was healthy enough to receive surgery, his operation was scheduled for the mission’s first day of surgery.

Sitting in the pre-operative room, Domingos looked both nervous and determined. He was welcomed into the operating room by the volunteers, including Dr. Geronimo Brilao, a Mozambican surgeon who was observing the mission. They exchange a few words in Portuguese before the course of Domingos’ live is changed over the next hour.

After the final suture was closed, Domingos looked at his new smile for the first time. The doubt he once expressed became nothing more than a memory.

“When I look in the mirror, I am very happy because something has changed,” Domingos said. “I am a strong man now.”

Domingos admires his new smile while resting at the patient shelter. Photo: Zeke du Plessis

The day after his surgery, volunteers and staff saw Domingos sharing laughs and celebrating with people they hadn’t previously seen around the patient village. To their surprise – Domingos had said that he had no other family except for his son – it was his sister, brother and cousin.

“I have experienced this before,” said Carlos Mahalambe, an Operation Smile patient advocate in Mozambique. “I think it’s often easier for people to say they don’t have family when they are still dealing with shame, and so they try and wait to see what will happen (with their surgery).”

Domingos’ brother, Alberto, said that life was very difficult for his sibling growing up, and even when they heard that he would be attending the mission, they remained skeptical about his potential surgery. But on this day, the beaming smiles and lingering glances at Domingos’ new smile showed that they are now true believers.

“We thought there was no cure, but now we have the proof that there is a cure,” Alberto said. “The day he goes home, everyone will admire him because no one expected this. Now his life has changed, and he is different from what he once was. He is a new-born man.”

His cousin, Daniel, added: “To me, he was always a good man with good fellowship with others. And to those people who have rejected him, I hope Domingos can forgive them and carry on with his life.”

As a widower, Domingos had been reluctant to seek a new partner because of his cleft lip, but after his surgery, he said that he is thinking of a new future: “I think it might be time to start thinking about getting married again one day.

“I don’t know how to thank the team for everything they have done for me. I thank God. They must continue to do this.”

Domingos poses proudly with his brother and sister. Photo: Zeke du Plessis.

Braving the World Together

Noemia and her mother, Bendita. Photo: Zeke du Plessis.

Children like Noemia possess a special form of bravery.

It’s a courage that can often be concealed by shyness and vulnerability. This courage endures teasing and mockery with a sense of dignity that many struggle with when faced with adversity.

It’s what allows a 10-year-old girl to let go of her mother’s hand and walk into an operating room.

Noemia was born outside of the city of Quelimane in Mozambique. Her mother, Bendita, and her father, who are subsistence farmers, were heartbroken when their daughter was born with a cleft lip, a condition that didn’t affect their four other children. For 10 years, Bendita never knew that surgery was an option and lived each day believing that she was helpless to do anything.

“I only heard about this mission when the headmaster at Noemia’s school told me about it,” she said.

Mothers like Bendita also have their own form of bravery, an instinctive need to protect their child no matter what the future holds. This need is relentless and lasts a lifetime.

As soon as Bendita learned about the mission, she didn’t hesitate to make the two-hour trip with Noemia on the back of a neighbor’s bicycle to reach the Operation Smile team.

Bendita listens as an Operation Smile medical volunteer conducts his part of her daughter
Noemia’s comprehensive health evaluation. Photo: Zeke du Plessis.

During the screening process, Noemia was encouraged to play with the other children at the mission. She was nervous at first, but the more she engaged, the less reserved she became. As Noemia played, Bendita found time to connect with the other parents.

“When I saw all of these parents, it helped to see I wasn’t the only one,” she said.

Bendita is a cheerful and kind woman who is quick to smile and ready to laugh, but when asked about what life has been like for her daughter, her disposition changes.

“I feel very bad because Noemia is being laughed at,” said Bendita through an upwelling of emotion. “I have nothing else to say.”

Photo: Zeke du Plessis.

After Noemia received a comprehensive health evaluation, she was deemed healthy enough for surgery and placed on the mission schedule. When the time came for her operation, both Noemia’s and her mother’s bravery were tested as she was taken into the operating room.

But Bendita’s confidence did not falter.

“I am not scared because I am sure Noemia will be fine,” she said.

Her daughter’s successful cleft lip surgery affirmed Bendita’s faith in Operation Smile’s medical volunteers.

Two days after Noemia’s operation, Bendita was glowing with joy over her daughter’s new smile.

“I was very, very happy when I saw Noemia,” she said. “The people laughing at her will now be laughing with her.”

Noemia enjoys school and has developed a love for writing. Bendita hopes that her daughter will continue to study and one day become a teacher.

Bendita said that she’s thankful for what Operation Smile and its medical volunteers have done for her daughter. She added that she’s grateful to the headmaster for letting her now about the possibility of safe surgery.

As a parent who has firsthand experience of the care that Operation Smile provides, Bendita offers this message for all of the mothers whose children are living with cleft conditions:

“Be patient, because when the time comes, they will be treated as Noemia was.”

A Life-Changing Journey for Two Sisters

When we first met Vaviroa and Nambina on our medical mission to Tamatave, Madagascar, the six- and two-year-old sisters shyly hid behind their parents and barely said a word. Years of bullying taught these young girls that the world didn’t want to see their smiles.

The girls’ parents knew that because both of their daughters were born with cleft, they would suffer deeply their entire lives — experiencing social ostracism, bullying, even physical pain — but surgery was out of the question. They had never been able to take their daughters to see a doctor, let alone afford two surgeries.

But that all changed this past fall, when Vaviroa and Nambina both received surgeries to fix their clefts — thanks to generous people like you.

As we prepare to go back to Madagascar this week, we hope you’ll take a moment to watch the inspiring video below about these brave sisters and their incredible journey.

To Heal and to Comfort

Editor’s Note: In August, we covered Operation Smile in Madagascar’s first-ever surgical training rotation at Centre Hospitalier de Référence Régionale in Antsirabe. Since then, we have conducted five out of the six rotations scheduled for 2017. Building on Operation Smile’s commitment to strengthening health systems where it works, international teams of medical volunteers provide training to Malagasy health care professionals by providing safe surgery for children suffering from cleft conditions. Throughout the rotations, we’ve been receiving informative and inspirational field updates from Charlotte Steppling, the project manager for Operation Smile in Madagascar. In this two-part “From the Field” series, Charlotte shares the compelling stories of two patients who received surgery during the fourth rotation, which took place Sept. 23 through Sept. 29. This is the second story.

Ten years ago, Mampionona was born in a small village 230 kilometers west of Antananarivo.

“When he was born, his mother did not know what to say – she had just seen her sister die from illness. She was very emotional when her baby was born,” said Tantely, Mampionona’s aunt. “We named the boy Mampionona, which in Malagasy means ‘to heal and to comfort.’ This baby became our healing and our family’s comfort.”

As a newborn, Mampionona had difficult eating because of his cleft lip. His mother tried hard to feed him milk with a cup. At 6 months old, he started eating solid foods and was able to gain a good amount of weight.

“This child was a gift – a gift from god. God knew that our family needed something special,” Tantely said. “We had just lived through a traumatic death in the family and this baby was here to comfort us. He gave us a child with a cleft because he knew we could take care of him.”

The family had heard that in a larger town nearby, there was a local doctor that could offer cleft surgery.

“But the surgery was so expensive,” Tantely said. “We tried saving up, but then ended up spending money on chickens, rice and household items. We never thought there would be a solution.”

In August, Tantely was invited to a wedding in another city. At the wedding, she met a young mother who was rocking her baby girl in her arms. Making pleasantries, Tantely asked her, “That is a beautiful baby, how old is she? Is she your only child?”

Tantely’s eyes widened as she glanced at the baby’s face.

“Does – does – did your baby have a cleft?” The words stumbled out of her mouth.

The mother of the baby nodded yes. She explained that not even two months prior she had gone to Antsirabe and received free surgery from Operation Smile.

Later that day, Tantely called Operation Smile in Madagascar’s hotline number. She spoke to Flex Manantsoa, the patient coordinator for Operation Smile in Madagascar and registered her nephew in the database.

One month later, Flex gave Mampionona’s family a call to inform them that he would have the chance to receive surgery at surgical training rotation being held in late September. The family was elated.

“I couldn’t believe it!” Tantely said. “I decided that I would accompany Mampionona to Antsirabe. His mother was pregnant and his grandma cannot travel long distances, so it was my duty to bring him.”

Before Mampionona arrived at the patient village on Friday afternoon, he had never seen another person with a cleft. He told his aunt, “Can you believe it? Look at this village – everyone looks like me! Everyone has a cleft. Even the small kids, even the babies, and even the adults – they all look like me!”

Mampionona went through screening and was selected for surgery. During the week, they met and talked with other families about their experiences.

“We all agree that it is such a relief to be here,” Tantely said. “To be taken care of by such nice people, and everything is free. From a place to sleep to soap to wash ourselves. We are so thankful.”

The following week, Mampionona returned to his village. It will be a big change for the villagers who have always known him for his unique cleft.

“They don’t believe we are really getting surgery – they think that to receive surgery I must give a piece of my thigh to put on Mampionona’s lip! Can you imagine? I mean, I would still give a piece of my thigh if I had too! People will be so shocked and surprised to see him. To see him smile. To see him look like everyone else,” Tantely said.

“I am going to tell everyone about this experience. I am going to find more people more children like Mampionona. I thank everyone on the Operation Smile team. Thank you for giving Mampionona the gift of smiling like all other children. Thank you!”

A Landmark Patient

Photo: Charlotte Steppling.

Editor’s Note: In August, we covered Operation Smile in Madagascar’s first-ever surgical training rotation at Centre Hospitalier de Référence Régionale in Antsirabe. Since then, we have conducted five out of the six rotations scheduled for 2017. Building on Operation Smile’s commitment to strengthening health systems where it works, international teams of medical volunteers provide training to Malagasy health care professionals by providing safe surgery for children suffering from cleft conditions. Throughout the rotations, we’ve been receiving informative and inspirational field updates from Charlotte Steppling, the project manager for Operation Smile in Madagascar. In this two-part “From the Field” series, Charlotte shares the compelling stories of two patients who received surgery during the fourth rotation, which took place Sept. 23 through Sept. 29. This is the first story.

Tsifoina was born with a cleft lip in 2016. On Tuesday, Sept. 26, the 9-month-old boy became the 2,500th patient to be operated on by Operation Smile in Madagascar.

“When I gave birth to Tsifoina, I was so surprised – shocked to see his cleft. The doctor and midwife took him to the neonatal ward and came back to comfort me,” said Tiavina, Tsifoina’s mother. “They explained to me that cleft can be repaired. Yet, I couldn’t hear anything they said – my mind was blank. I was so surprised and could only imagine, ‘How could this happen to us? What did I do? What did this child do to deserve this?”

Tsifoina’s parents had seen television advertisements and heard from word-of-mouth that there were options for surgery, among them Operation Smile. First, they searched the internet and found the Operation Smile Facebook page. They contacted Operation Smile through direct message and spoke with Mamy Ramamonjisoa, country manager for Operation Smile in Madagascar.

“Two weeks after Tsifoina’s birth, we received an appointment to meet with Mrs. Mamy,” said Tsitohaina, Tsifoina’s father. “She explained to us that there are many different possibilities and she shared the information about the next international medical mission in Antsirabe in May.”

When the mission arrived in Antsirabe, so did the family with the hope that their then-4-month-old son would receive surgery.

Unfortunately, Tsifoina was not chosen for surgery at the mission. Due to the overwhelming patient turnout – more than 500 arrived for screening – older children were given priority over infants like Tsifoina, who could wait for a future program and still be within ideal age range for surgery.

“I still kept hope. I knew that one day Operation Smile would call our family and we would have our turn to receive surgery,” Tiavina said. “I was impressed when I saw all of the children, all of the mothers, waiting to be chosen. There were hundreds. I told my husband, ‘One day it will be our turn. We must believe.’”

“We were told that there will be another international mission in November, but we were very surprised that we were called to come in September because there would be a mini-mission in Antsirabe,” Tsitohaina said of the opportunity for his son to receive surgery at the fourth of the six surgical training rotations being conducted in 2017.

“I could barely sleep – the days couldn’t go by any slower! We could not wait until September to go to Antsirabe,” Tiavina said.

The rotation arrived and Tsifoina received surgery from surgeon educator Dr. Mwepu of the Democratic Republic of the Congo and his mentees Drs. Ravaka and Briand of Madagascar. His mother and father patiently waited for him to come out of the operating room.

Once reunited with their son, tears of joy spread across the parents’ cheeks.

“Since the beginning, we were confident that if he receives surgery from Operation Smile, the results would be extraordinary,” Tiavina said. “And we are also so pleased to hear that Tsifoina is the 2,500th patient operated on in Madagascar!”

“What an honor,” Tsitohaina said. “We are so grateful to Operation Smile for having offered smiles to 2,500 patients in Madagascar. Thank you!”

Photo: Charlotte Steppling.

A Passion for Malagasy Smiles

True passion is a rare and precious thing. In the case of Andriarimalala Solo Radaoroson, his passion for Operation Smile’s work in Madagascar changed not only his life, but numerous other lives as well.

Mr. Lala, as he is affectionately known, had never witnessed a cleft condition until his daughter, Laly, was born with a cleft lip.

“I had heard about it as a boy, but I was very sad when she was born as I had never thought it could happen to her,” Lala said.

He admitted that her condition was difficult to manage, as she seemed to fall ill more often than other children. He feared she would not live long.

However, when Laly was nearly 2 years old, he heard a radio announcement regarding an Operation Smile medical mission to Tamatave in September 2015. After travelling nearly 400 kilometers by bus, Laly was selected for and underwent surgery. The free procedure proved to be a defining moment for Lala and his family. “There is no word to describe our happiness,” he said. “She was finally like everyone else.”

 

“I am not going to stop. Once I have finished with my district I will move on to the next one.”

Andriarimalala Solo Radaoroson

 

Upon returning home to his village, Lala found himself aflame with a desire to tell more people about the life-changing surgeries Operation Smile provides for patients in Madagascar.

“When I saw all the people with this problem, I decided to tell everyone that there is an organization that does this work,” he said enthusiastically. “Many people think I am a liar at first and trying to lure them into something strange, but eventually, they accept me.”

This indomitable spirit persuaded 33 patients from Lala’s district to travel to the Antananarivo medical mission in April 2016. Twenty-one of these adults and children were scheduled for surgery while the others will be assisted at upcoming missions.

Lala visits families around his district either on his bicycle or in the course of his work as a builder. He admitted this commitment means he’s not able to earn as much as he would if he were working full time. However, after his daughter received surgery, he wanted to bring the same happiness to people affected by cleft conditions in his district.

Lala follows a three-step process, beginning by showing them pre- and post-operation images of Laly. He then attempts to convince them that a transformation like his daughter’s is possible and finally explains that this surgery will cost them nothing.

One of the patients who Lala impacted is Fidelis, a shy 8-year-old who loves to play soccer but clings close to his mother. She found hope for her son when Lala visited them and explained how Operation Smile could help.

“People, especially children, tease him and so he often runs away from school as he cannot bear the teasing,” she said. “We didn’t know it could be fixed until Mr. Lala came and showed us the pictures. Now we are so happy that our son will live a normal life.”

Lala has no plans to slow down his search for potential Operation Smile patients.

“I am not going to stop,” he said. “Once I have finished with my district I will move on to the next one. I want Malagasy people to know Operation Smile can help them.”

Editor’s Note: Mr. Lala delivered on his promise again when he brought 57 patients and their families to the September 2016 Antsirabe medical mission. Photo: Zute Lightfoot.