Sisters’ Lives Transformed Through Safe Cleft Surgery

Sisters’ Lives Transformed Through Safe Cleft Surgery

Jheleen and Andrea before surgery

One of the most memorable moments for any parent is hearing your child say, ‘Mama’ for the first time. Such a simple word, but with it, a flurry of emotions and a love felt beyond words.

But not for Laila, mother of sisters Jheleen, aged four, and Andrea, aged three. Laila never heard this word spoken properly by her daughters. Each baby girl was born with a cleft condition. This made feeding very difficult for them, let alone speaking – and with their condition came a young life full of ridicule and shame for this family from the Philippines.

Laila and her husband Ronald doted on their two beautiful daughters, but they lived in constant worry as to how they would be able to heal their daughters’ broken mouths. Ronald’s meagre income barely allowed them to feed and clothe their family – they couldn’t imagine how they could ever afford the surgery that would change Jheleen and Andrea’s lives. When they did approach a doctor locally about what to do for their daughters, they were told that surgery could not be performed until the girls were seven years old. This explanation could not be further from the truth. In fact, cleft surgeries are recommended for healthy children before the age of two to yield the best healing results – something they had no way of knowing.

When they received a neighbourhood flyer that told them surgery was both possible for their young girls and free, they immediately pre-registered for the Operation Smile mission to the Philippines in November 2012.

Doctors and nurses evaluated the girls and found they were fit for surgery – this brought unmeasurable joy to Laila and Ronald who felt a deep trust and admiration for the Operation Smile medical teams who met the girls at the hospital.

After surgery, the girls were each given a mirror so they could see their new smiles. It took Andrea three days before she accepted that she was the little girl looking back at herself.

For their mother Laila, hearing Jheleen & Andrea pronounce ‘Mama’ properly for the first time brought her tears of complete happiness.

The girls are no longer stared at, teased and called names. They love to go to school and play with other children.

Jheleen & Andrea’s surgery has changed the lives of the whole family and they now look to their future with optimism and hope.

Operation Smile continues to visit the Philippines, as well as an average of 28 other countries annually, performing safe surgeries, as well as training local medical professionals and building a lasting solution in communities. This investment will mean a better future for children like Jheleen and Andrea – who will now have access to safe, effective and timely surgery when it’s needed most.

Andrea and Jheleen after surgery

Rikta’s Purpose

Photo: Jasmin Shah.

When one looks at this beautiful young woman, it’s hard to believe that earlier in her life, people refused to come near her.

Rikta was born with a cleft lip and palate, but today she’s a happy 20-year-old with dreams of getting into nursing school so that she can provide care for children like herself.

With the confidence and drive to pursue her goals, Rikta’s life is full of possibilities.

Before her parents connected with Operation Smile, it appeared that her future wouldn’t be this bright.

Rikta with her mother, Meera. Photo: Marc Ascher.

After giving birth to Rikta and seeing her baby’s cleft lip and palate for the first time, Rikta’s mother, Meera, felt like she had lost everything. She often cried through the first days of Rikta’s life, pleading to God for the reason why her daughter was born with a cleft condition. Her husband, Shyamapada, was too shocked to speak.

Although they were happy to learn that surgery could repair Rikta’s cleft lip shorty after her birth, their joy was fleeting. The cost of the operation exceeded their family’s means, and they left the hospital without a solution to help their child.

That pain only intensified after they arrived home.

Meera and Shyamapada were met with accusations and blame from some neighbours who insisted that Rikta’s cleft condition was caused by one of them having done something wrong on the day of an eclipse.

Rikta’s cleft lip and palate made it almost impossible for her to breastfeed properly. Desperate to help her daughter, Meera resorted to feeding her milk with a spoon.

But she knew that Rikta’s struggles were far from over. Having contracted polio when she was younger, Meera has difficulty walking. And she feared that her daughter would endure harmful ridicule.

Photo: Marc Ascher

Meera’s worries were realised when Rikta started school. Due to the social stigma surrounding cleft conditions in her community, Rikta was not accepted by her classmates. She also experienced difficulty speaking clearly, and few people outside of her family could understand her.

“Every day, Rikta comes home and cries,” Meera said. “She compares herself to her sisters and brother and asks me why she’s not like them.”

Despite her anxiety about Rikta’s future, Meera held onto hope that one day she would have the chance to live a full and happy life.

When Rikta was 6 years old, that day finally came.

A neighbour brought Meera and Shyamapada a brochure detailing an upcoming Operation Smile medical mission in Bolpur, West Bengal; a city that’s a few hours away from their home by train.

Rikta waits with her mother during screening day at the 2005 Bolpur mission. Photo: Marc Ascher.

Anaesthetist Dr. Rodelo Valera of the Philippines checks Rikta’s vital signs during her comprehensive health evaluation. Photo: Marc Ascher.

After arriving at the mission site, Meera and Rikta saw the immense number of families that also made the journey. After receiving an extensive and comprehensive health evaluation from the Operation Smile medical team, Meera and Rikta waited anxiously with more than 450 potential patients and their families to learn if Rikta would receive surgery.

Meera was so relieved when Rikta’s name was called. The day she feared would never come had finally arrived; her daughter would be given a chance at a better life.

Rikta, her mother and child life specialist Shannon Case of the United States embrace each other before her surgery. Photo: Marc Ascher.

Emotions ran high as Rikta prepared for the operation.

Seeing that Rikta had become nervous and scared while waiting for her procedure, child life specialist Shannon Case helped comfort and sooth her before she entered the operating room.

Pre- and post-operative nurse Carrie Britton of the United States cares for Rikta, along with her mom, after surgery. Photo: Marc Ascher.

Later that day, Meera couldn’t hold back her tears of joy when she held Rikta in her arms after the successful surgery.

“From the deep core of my heart, I offer my love, affection, well wishes and endless regards for all of you. I am so extremely happy,” said Meera after seeing her daughter’s new smile. “It’s a new life for her. My dream has come true today. Thank you.”

Rikta would go on to receive two more surgeries from Operation Smile: one at the age of 10 for her cleft palate and an additional cleft lip surgery when she was 15.

It was after her latest surgery that Rikta decided that her purpose is to “dedicate her life to helping humankind.”

But even before aspiring to become a nurse, Rikta touched the lives of many.

Photo: Marc Ascher.

Operation Smile India Executive Director Abhishek Sengupta met the then-6-year-old Rikta and her mother for the first time when he was a student volunteer at the Bolpur mission. He worked as a translator, helping the family communicate with the medical volunteers.

Abhishek had the opportunity to not only meet Rikta before her surgery but see the confident young woman she became afterwards.

“Rikta’s journey is truly inspiring – it has been such a pleasure to see her grow up into this fine, ambitious, beautiful soul that she is today,” Abhishek said. “It’s a privilege. Thank you, Rikta!”

When Rikta learned about Operation Smile’s August 2017 Durgapur mission – 12 years after receiving her first surgery – she was eager to show her love and appreciation for the organisation that changed her life.

“I rushed here to thank them,” Rikta said after making the two-hour journey from her home.

Throughout Rikta’s life, Operation Smile and its medical volunteers remained committed to every step of her care and recovery. That unwavering devotion not only strengthened Rikta’s desire to help children but also created a lasting bond.

Today, Rikta is an honours physiology student in college who’s pursing entry into nursing school.

“Without them, I could not be what I am now.”

Photo: Marc Ascher.

In An Instant, Nicolle’s Time Arrived

Eleven-month-old Nicolle during Operation Smile’s 2011 medical mission in Guatemala City, Guatemala. Photo: Erin Lubin.

As police officers, Jessica and her husband, Maynor, are trained to shield people from harm – but after the birth of their daughter, Nicolle, they soon learned that there was nothing they could have done to protect the one person they loved most.

But regardless of the obstacles the first-time parents confronted, they faced them together as a family.

“From the moment we knew my wife was pregnant with our first child, we were filled with hope,” Maynor said.

Jessica and Maynor were joyful and excited on the day of Nicolle’s birth. But after receiving concerned glances from the doctors, their happiness soon gave way to feelings of fear and panic.

Nicolle was born with a cleft lip and palate.

“The doctors just looked at me but said nothing,” Jessica said. “Then, one approached me and asked if I knew my baby would be born with a problem. I became very scared.”

Learning that their baby will be born with a cleft condition can be heart-breaking for many parents to hear. However, becoming aware early on in the pregnancy often gives families something invaluable: time.

Time that can be used to discover available surgical solutions by researching hospitals and local medical organisations. It’s also time that parents can use to emotionally prepare themselves for the difficult journey ahead.

Sadly, time was something that Jessica and her husband didn’t have.

Not once during any of Jessica’s prenatal check-ups and ultrasounds was Nicolle’s cleft condition revealed.

“The doctor didn’t even want to tell me the sex of my baby,” Jessica said. “I didn’t know what the doctors were talking about when they told me my baby had been born with a cleft lip and cleft palate.”

Neither parent had ever seen someone with a cleft condition before.

Questions surrounding Nicolle’s cleft lip remained unanswered as Jessica and Maynor left the hospital – no one explained to them why their daughter had been born with a cleft.

Arriving home led to even more challenges and more uncertainty.

Nicolle’s cleft condition made breastfeeding difficult and Jessica admitted that one of the toughest aspects of having a child with a cleft lip was coping with the discrimination and rejection from members of their community.

“It was a very difficult time as we watched the other couples celebrating the birth of their babies, while we felt lost and were inconsolable,” Jessica said.

With the knowledge that surgery was possible, Maynor and Jessica researched organisations near their home for several months, hoping to find a way to repair Nicolle’s cleft lip and give her the life they knew she deserved.

For a long time, they were left without answers.

Nicolle smiles wide at her father, Maynor. Photo: Erin Lubin.

“We were constantly worried about how we could afford surgery on our police salaries,” Maynor said. “We wondered what her life would be like as she grew.”

Jessica and Maynor’s concern for their daughter only intensified after learning that Jessica’s mother had previously given birth to two sons with cleft conditions – both of whom later died in infancy.

But despite their fear and uncertainty about the future, their love for Nicolle motivated them to continue fighting for her.

In an instant, the lives of the family changed forever when Nicolle’s grandmother saw an announcement for Operation Smile in the newspaper informing people about the cleft lip and cleft palate surgeries it provides at no cost to its patients.

Hoping that it was the solution they had been searching for, Maynor and Jessica called to schedule an appointment for Nicolle. They were asked to come to an upcoming medical mission in Guatemala City before the call finished.

“When we arrived for Nicolle’s medical evaluation, we were received with love and understanding,” Jessica said. “Everyone from the Operation Smile team took great care of us and made us feel comfortable and calm.”

After performing a comprehensive health evaluation on Nicolle, the Operation Smile volunteer medical team was pleased to inform Jessica and Maynor that their daughter was healthy enough for a free, safe surgery.

During the moments leading up to Nicolle’s surgery, Jessica and Nicolle’s grandmother began to cry and expressed their worries about Nicolle being too young to undergo the procedure.

“She and Jessica were very scared about the surgery,” Maynor said. “However, the doctors were very understanding and encouraged us to be calm and said that everything was going to be fine.”

Later that same day, the entire family watched as Nicolle bravely entered the operating room.

“The hope that she was going to be perfect kept us strong,” Maynor said.

Nicolle shows off her new smile six months after her cleft lip surgery. Photo: Erin Lubin.

After receiving a surgery that can take as little as 45 minutes, Nicolle now has a beautiful new smile that will last a lifetime.

She later underwent additional surgery on her cleft palate at a future Operation Smile medical mission.

Nicolle three years after surgery. Photo: Carlos Rueda.

Today, eight years after receiving her life-changing cleft lip surgery, Nicolle is a lively young girl who enjoys attending school and her dance classes on Saturdays.

“We wish to thank everyone. The team, donors and companies who support Operation Smile,” Jessica said. “Nicolle now has a normal life. She’s a happy little girl who loves to play and is always smiling. We’re very grateful to Operation Smile because they changed Nicolle’s life and ours as well.”

Nicolle today. Photo: Carlos Rueda.

A Dad’s Dream for his Daughter

Photo: Rohanna Mertens

As parents who had been raising two healthy children, Armand and his wife, Solo, couldn’t have foreseen what happened on the day that their third child, Brunel, was born.

As they anticipated welcoming their daughter into the world, excitement filled their hearts. But when that time came, instead of being overjoyed, Armand and Solo were met with pain and sadness when Brunel was born with a cleft lip.

He was initially shocked at her condition, but Armand loved his daughter and never stopped believing that he would find a solution. And after three months of searching, Armand’s hope grew stronger when he learned that surgery was possible at a nearby hospital.

It looked as if Armand had finally found the answer for which he had been searching. But when doctors informed him that Brunel was too young and too small to receive care, his heart broke all over again. The hospital staff promised to contact him when surgery was possible.

That call never came.

Photo: Laura Gonzalez

As four years passed by, Armand and Solo watched Brunel grow into a friendly little girl with a lively personality and beautiful laugh. Armand always remained close by, watching over her and tirelessly protecting her. But even he couldn’t prevent the hurtful abuse and ridicule she would endure from her peers.

Armand told us that when Brunel attended school, some children would call her “sima,” a derogatory term for cleft in the local language of Malagasy.

Throughout Brunel’s life, he continued to worry about her future and agonised over the fact that he couldn’t get her the care that she needed. After years of repeatedly trying to find a solution, it seemed that surgery to repair Brunel’s cleft lip would remain out of his reach.

Then one day, Armand met Mr. Fidelis, a patient advocate for Operation Smile in Madagascar.

After his own child had been born with a cleft condition, Mr. Fidelis made it his individual mission to find other children and personally transport their families to Operation Smile medical mission sites. Armand and Brunel became one of those families.

After travelling together for 13 hours, they arrived at the mission site in Antsirabe.

Although Armand had been aware that there were other children with cleft conditions, he was stunned to see how many had arrived at the patient village, eagerly waiting to receive surgery from Operation Smile.

Operation Smile volunteer paediatrician Shelly Batra of the United States checks Brunel’s vital signs. Photo: Rohanna Mertens

Medical volunteers performed a comprehensive health evaluation and determined that Brunel was healthy enough to be put on the surgical schedule. At long last, she was going to receive the free, life-changing surgery which her father had been searching for her entire life.

Photo: Rohanna Mertens

Confident in the outcome of his daughter’s operation, Armand said, “I dream that after surgery, she’ll go to school and be like any other child.”

His dream would come true.

Photo: Rohanna Mertens

Photo: Rohanna Mertens

After a successful surgery, Brunel and Armand returned home. Overcome with emotion, when Solo saw her daughter’s new smile, she couldn’t stop kissing and hugging her.

Today, Brunel spends most of her time playing outside in her neighbourhood with friends who no longer call her “sima.”

When Operation Smile caught up with Armand a few months later, he had this message:

“Thank you Operation Smile,” he said. “Please say hello and thank you to all the Operation Smile Madagascar staff.”

Photo: Rohanna Mertens

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!”