Smile Train Stories

Curitiba, Brazil — A note from the mother of one of our patients that was given to and translated by our partner CAIF/AFISSUR after the excellent care her son received during his free cleft surgery and follow ups.

Lucas is my first child. I got prenatal care in the Public Health System and the ultrasound did not show any problems, so I expected Lucas to be a normal baby. I was really shocked when he was born with a cleft lip and palate. Due to his cleft, he spent eight days in the hospital. At the beginning due to our shock over his cleft and the problems he had nursing, everything was very difficult for me and my family.

“For a long time, I felt guilty for Lucas’ cleft lip and palate. I assumed it was because of the way I acted during the time I was pregnant. However, after arriving at CAIF/AFISSUR, I was welcomed by a team of professionals and heard about Smile Train’s free cleft surgery program.

“With the help of this team and Smile Train, Lucas is getting high quality treatment and he can have a normal life just like other children his age. I don’t have enough words to thank CAIF/AFISSUR and Smile Train.”

Sullana, Peru — Whenever a child undergoes surgery, his or her parents are often nervous and a little scared — who wouldn’t be? For 5-year-old Florcita, who was born with a cleft lip and palate, her parents were so frightened about what could happen to her during surgery that they didn’t search for help to have her cleft repaired.

Fortunately, Florcita’s aunt had her own soft palate repaired by Smile Train and when she was discharged she went straight to Florcita. She convinced her family that there was nothing to worry about and that free cleft surgery would change Florcita’s life forever.

Florcita’s father quickly brought her to see Dr. Navarro and his team who went over Smile Train’s established safety protocols and checklists to alleviate his fears. Florcita’s cleft lip surgery went smoothly and when her lip heals she’ll be showing off a bright new smile. Extremely happy, her father praised the team and hopes that Florcita will be able to have her cleft palate repaired soon too as she starts her new life.

Lima, Peru — One of Smile Train’s most prolific partners, Dr. Carlos Navarro, M.D. F.A.C.S. provides Smile Train sponsored free cleft lip and palate surgeries throughout Peru. While he is based out of Lima, he also travels to poor, remote, and rural areas of Peru such as Tarma.

This past weekend, Dr. Navarro and his team finished a two day stint at Hospital Santa Rosa in Lima where they operated on 12 children with clefts and one teenager. That’s 13 more new smiles and second chances at life! In mid-February, the team will be traveling to the Northwestern city of Sullana for the first time to provide surgery and care while evaluating the overall need in the region.

6-month-old Saul Hinostroza waits on his mother's lap for Smile Train surgery at Hospital Santa Rosa.

Saul Hinostroza in his mother's arms after free cleft surgery provided by Dr. Navarro. He'll have a lot to smile about when his sutures heal.

Salvador, Brazil — Two years ago, eight-year-old Taina Dos Santos was a shy girl. Hiding her mouth from strangers and even her family. She would go to school, but was constantly made fun of and teased. When her siblings started to be made fun of for Taina’s cleft lip and palate by their classmates too, it only made it harder for Taina and her family.

Taina was born with a severe cleft lip and palate. She had trouble eating and speaking properly. She relied upon her family for compassion and support when she was tormented by the outside world. Before her mother brought her to Smile Train Partner, Fundacion Pequeno Principe, she avoided catching her reflection in a mirror at all costs: ashamed at her birth defect that separated her from her schoolmates.

Tania immediately after her cleft lip surgery

All of that changed on a fateful April day in 2009, when Dr. Geza Laszlo Urmenyi repaired her cleft lip free of charge thanks to Smile Train donors, as her mother Cirlene explained.

The surgeries were a victory for me. My dream since Taina was born has been these surgeries. My daughter and I faced many difficulties to finally find cleft services in Martagão Gesteira. All of my children were disturbed at school. After Taina’s first surgery, it didn’t happen anymore and they could study in peace.”

Tania just prior to her cleft palate operation, two years after her cleft lip surgery

Cirlene, was unable to bring Taina back to repair her cleft palate until recently, but Taina’s surgery and progress has been followed closely by family and friends who have seen a metamorphosis in their little girl that they never thought was possible.

“Before Taina didn’t look herself in the mirror. Today she is different, she is proud and likes to use lipstick like her classmates. All of my friends and neighbors in the countryside followed Taina’s treatment and got very happy with the result. I cried a lot when I saw my daughter’s operation, but this time, they were tears of joy.”

On behalf of Taina and her family, thank you Dr. Urmenyi, your staff, and everyone who has made Taina’s transformation possible.

Lima, Peru — Lightning has long fascinated and influenced mankind: from the myths of its use as a weapon of gods such as Zeus and Thor to Benjamin Franklin tying a key to his kite in a storm to children across the U.S. eagerly watching it strike on a warm summer’s night in the safety of their rooms. As science has disproved the supernatural, the awe still remains. Unfortunately, in more remote areas of the world, the superstitions remain as well.

Jhon Mancilla Aguilar was brought to Smile Train partner Cirplast by his mother, a young woman struggling to raise her child that she thought she unknowingly cursed. When Jhon’s mother was pregnant, she found herself staring at the sky watching in astonishment as lightning repeatedly struck in the distance before it reached her village. Her family rushed her inside fearing that the lightning would harm her unborn child. When Jhon was born with a unilateral cleft lip, she blamed herself, believing that she had cursed her son to a life of shame and humiliation.

She was living with deep guilt when a hospital outreach volunteer spotted her in the village and, after a long talk, convinced her that it was a birth defect that could easily be repaired for free by Smile Train. She immediately packed her things and took her son to have his cleft repaired so he could live a normal, happy  life.

Jhon received his surgery and beautiful new smile. The burden of the unwarranted guilt that had weighed down his mother was lifted, and she eagerly took Jhon home to show her family the amazing miracle that occurred. She is full of hope that her son will have a good life for the first time since Jhon was born. All thanks to Dr. Carlos Navarro, his team, and Smile Train donors.

Sucre, Bolivia– Rodolpho Picha Picón recently received a belated first birthday gift that he will never remember, but will change his life forever: free cleft lip surgery.

Rodolpho was born on May 11, 2010 to Nicholas and Marcelina Picón, rural farmers who have never learned to read or write. After three days of labor, Marcelina held her third child in her arms unable to comprehend what was wrong with her baby. Nicholas and Marcelina argued at the cause of Rodolpho’s disfiguring cleft lip and palate thinking that it was a curse brought down upon them for something that they had done. Nicholas shunned his newborn son realizing how hard it would be for the family to feed and take care of him alongside Rodolpho’s healthy older sibling. At one point even wishing that Rodolpho died so that he could focus on taking care of the rest of his family.

Not knowing that clefts are birth defects, Marcelina clung to her son, desperate to find a way to help him. Aided by her other children, Marcelina prevailed on Nicholas to accept his son and to journey to the capital city to find help. At the hospital in Sucre, Nicholas was given bittersweet news, Rodolpho’s cleft was curable with a simple surgery, but the surgery cost more money than he could ever hope to afford. He returned with a renewed spirit to help care for Rodolpho, and together with Marcelina, they decided that somehow they would save enough money for the surgery, even if it took fifty years.

A month later, a miracle happened. After getting off of an extra job as a mason, Nicholas met a stranger and they struck up a conversation, which culminated in the revelation that the cleft surgery Rodolpho needed was being done for free through Smile Train partner Esperanza Bolivia. Nicholas and Marcelina brought Rodolpho to the hospital and were show pictures of other cleft patients that had received free cleft surgery. Tears filled their eyes as they realized that Rodolpho now had a chance at a normal life. Rodolpho came out of general anesthesia with a newly repaired cleft lip. He is currently scheduled to receive cleft palate surgery once he regains his strength. His parents are eager to see him safely through his second surgery and get started with his life.

Campinas, Brazil – Smile Train would like to congratulate SOBRAPAR Hospital on being selected amongst the top 10 of 630 hospitals in Sao Paulo state. A Smile Train partner since 2000, SOBRAPAR was selected as one of the best hospitals after a patient survey of over 200,000 participants throughout Brazil’s largest state.

SOBRAPAR won this great honor for its excellent medical care, the quality of its facilities, and the outstanding treatment of its patients and their families. Over 1,300 children born with cleft lip and palate have been given new lives through Smile Train’s partnership with SOBRAPAR and this prestigious designation shows that the staff of the hospital remain dedicated to providing top quality cleft care. The hospital continues to be a key leader for Smile Train in South America, producing some of the finest cleft professionals in the world out of its training programs and researching how best to fully care for children born with cleft lip and palate.

Please join us in extending our congratulations and thanks to SOBRAPAR Hospital and all of the remarkable, surgeons, doctors, nurses, administrators, and staff for this prestigious recognition and their commitment to their patients and making sure every child can smile.

Tarma, Peru – Dr. Carlos Navarro and his team at CIRPLAST have provided over 2,000 Smile Train surgeries in the last decade. As one of our longest serving partner surgeons, Dr. Navarro prides himself on providing cleft lip and palate surgeries not only nearby his hospital, but in the hardest to reach areas in Peru so that all of the children in his country can smile.

A few years ago, after hearing of the desperate need of children in the city who do not have a cranio-facial surgeon of their own to turn to, Dr. Navarro and his staff traveled to Tarma to start offering their services free of charge. The team has traveled to Tarma numerous times to provide surgery and follow up care. Affectionately known as the Pearl of the Andes, Tarma is as breathtaking as it is unique. Nestled 10,000 feet above sea level, getting to Tarma is an adventure unto itself.

The central highways,  or Highway 20 as it is known, is really a very high road, because it goes up to 4818 meters at the highest crossing point on the central Andes Mountain range, before it starts going down on the other side of the slope. It goes through Oroya, where the American Doe Run mining company is working, and then divides into a road that goes to Jauja and Huancayo going south along the Mantaro River. The other road heads north and after a short stretch it divides into one going east to Trama, and eventually down to the Chanchamayo province, which is the so called jungle-eyebrow (ceja de selva), meaning that its geography is a mixture of mountains and jungle, with a climate that  is not quite as hot and humid as it is in the Amazon jungle, and is not quite as cold and dry as it is in the mountains; the other road goes northeast to Cerro de Pasco, a mining town. At 14,370 feet (4,650-4700m) elevation, it is one of the highest cities in Peru. It is a very steep and winding road all the way up to Ticlio, where it snows quite frequently all year around

- Dr. Navarro (Can you tell that he is also a retired professor?)

Recently, the team came back with many amazing tales of children and their families that they were able to help, but perhaps the most striking patient is Maria Hurtado. Maria was born with a cleft lip and for 70 long years, never knew it could even be corrected. Long ago, she had come to terms with never being seen as normal in her community and was almost hesitant to have it repaired as she had lived with it for so many years. With a little persistence, Dr. Navarro walked Maria into the OR and performed her surgery: imagine, waiting 70 years for a simple surgery. Over 25,550 days spent waiting for 1. Maria’s jubilation was seen as she participated in a local religious celebration even before her surgery was fully healed: you can be sure that for her, the celebration was even more meaningful as she was able to let go of 70 years of doubt, unwarranted shame, and even ostracization. Thank you to all of our partners and donors who provide so many new lives.

Fundacion Gantz, in Chile — a Smile Train partner since 2002 with over 1700 surgeries — sent us this story of a young mother from Bolivia who crossed the border to get free cleft surgery for her child.

“Esau came to our Foundation when he was almost a year old. He came alone with his mother from Bolivia, and had both his lip and palate untreated.”

When Esau was born, Yovana, his mother, was terribly worried, she knew nothing of clefts, and no one helped her. She even thought that Esau could die, as he had feeding problems.”

“A few weeks before traveling to Santiago, she knew, through another non profit organization, Chuqui Ayuda, of Fundacion Gantz and that treatments for clefts were possible. She sadly recalled the rejection of people when seeing her child.”

“Yovana was very surprised in Esau’s change after the adhesion and grateful for the prompt response.”

“We’ve enclosed the before and after pictures of Esau in his mother’s arms. Notice the colorful “aguayo” (baby sling) in which he is carried.”

Brazil is the fifth largest country in the world, with the eighth largest economy. Its largest city, Sao Paulo, is the seventh largest city in the world with 18.8 million inhabitants. Despite Brazil’s relative prosperity, there is still a large population living in extreme poverty, and access to reliable medical care is a luxury that many cannot afford.

We recently heard from Smile Train partner Dr. Daniela Tanikawa, who works at the University of Sao Paolo. A partner since 2008, Dr. Tanikawa is one of Smile Train’s strongest partners in Brazil. Dr. Tanikawa sent us stories from Brazil, of three Smile Train patients who had been stigmatized by their community because of their cleft lip and palate.

Rodrigo and Edilene

“Rodrigo and Edilene are siblings that come from the Indian Community Sateré-Mawé in the Amazon Forest, where the presence of a physical disability means the possession by the devil. Because of this, Rodrigo and Edilene have always been stigmatized. In their community, children used to taunt and tease them and adults used to consider them a bad omen. Medical treatment was never an option for them. One day, however, a medical expedition from the University of São Paulo School of Medicine finally found them. One of the doctors was moved by their story, and after getting in contact with the Division of Plastic Surgery, Rodrigo and Edilene were brought to São Paulo. In February of 2010 the siblings received cleft lip and palate repair. Ediana, their mother, could not believe her children went from being an evil curse to very lucky and blessed new kids. After two weeks they went back home, and now because of the Smile Train partnership their lives are completely changed.”

Maria Eduarda

“Maria Eduarda’s parents are teenagers that were devastated when they saw their first newborn daughter was born with cleft lip and palate. In addition to being young, inexperienced parents, there were feeding difficulties and compromised weigh gain related to the cleft deformity. Because they had little money, they initially thought there would be no solution to their baby’s problem. But after a pediatric consultation, they were referred to the Craniofacial Center of the University of São Paulo School of Medicine. At their first consultation they received instructions on feeding, surgeries, post-operative care and speech and aesthetic issues, which has alleviated much of their anxiety. One month later, Maria Eduarda underwent primary cleft lip repair. Because of the treatment protocol established by the partnership of Smile Train, her parents are now much more confident their baby’s problem can be solved.”