New Year, Fresh Start: Lucas Oliveira Success Story

As a child, one of the hardest parts about having a cleft is looking different from everyone around you and finding acceptance. It’s not uncommon for children who attend school with clefts to be excluded from play, taunted and teased. Lucas Oliveira was one of these children stigmatized and bullied for his cleft and this unfortunately led to low self-esteem. Lucas says, “I spent the first 8 years of my life growing up very shy and sad.”

Thanks to Smile Train Partner Hospital, Associação Saúde Criança, Lucas was able to receive free surgery for his cleft and after the surgery and the physical and emotional healing started to begin. Next, Patricia signed Lucas up for music therapy treatment. Lucas began singing every day, and he even got his brother to practice singing with him when they were at home and the therapy was an astounding success. These choir sessions encouraged Lucas, boosted his confidence, and made him more comfortable with his speech. Today Lucas, besides being a singer is also a champion jiu jitsu fighter, an actor in soap operas, and a global model.

Patricia, says that she is forever grateful, and that she still, sends hospital updates and pictures of Lucca’s amazing progress. What a success story!

Lucas, after surgery, in one of his model shots.

Lucas, after surgery, in one of his model shots.

From Brooklyn to Brazil: A Transformational Journey

Jacob (on the right, in a Smile Train shirt) with Maria Emanuela & her family.

Jacob (on the right, in a Smile Train shirt) with Maria Emanuela & her family.

Guest blogger and Smile Train staff member, Jacob, shares his experience meeting Smile Train patient, Maria Emanuela, on his most recent trip to Brazil.

Recife, Brazil –My name is Jacob. I’m the Associate, Special Projects and Assistant to the CEO and have worked at Smile Train for almost two years. Recently, I was given the opportunity to go to Brazil to visit our local in-country Smile Train partners and patients. I speak Portuguese, so I relished the opportunity to speak directly with patients and families without the need of a translator. This story is about my visit with a little girl named Maria Emanuela who received her free surgery four years ago thanks to our local Smile Train partners in Brazil.

We met Maria Emanuela’s father, Jobson, at a public square and were led through a maze of unpaved one-way streets, some of which had huge puddles of water and mud to navigate through. After ten minutes, I wondered if we would even be able to find our way out or even if we would be able to turn the car around.

Fortunately, after some struggle, we were able to find the house. We were greeted by Girlene, Maria Emanuela’s mother, and asked to come in as she hugged us and thanked us for visiting. Then I finally got to meet Maria Emanuela, although at first she was more interested in eating cake with her sister than meeting the strangers in her house. Soon, she began to show us to her bedroom and her collection of dolls.

I returned the family’s hospitality with a care package from a special Smile Train donor that had a lot of neat things for kids: a coloring book, bracelets, crayons, a toothbrush and toothpaste, a comb, a small mirror, among other fun things that kids would enjoy. Maria Emanuela and her sister took to coloring immediately. Maria Emanuela promised that she would brush her teeth every day.

As a final gift we brought a picture of Maria Emanuela before her surgery, something that the family did not have. The child in the photo was almost unrecognizable to her parents, and we learned that the family sought treatment within seven days of Maria Emanuela being born. They said they had never seen anyone with a cleft lip before and were very relieved when they arrived at our Smile Train partner hospital, Center of the Care of Facial Defects at IMIP, to find other families and patients just like them. Our Smile Train partners talked to the family about how common cleft births actually are and the importance of following up with Maria Emanuela’s treatment schedule for a full recovery.

As we wrapped up our visit with Guaraná, a Brazilian soft drink, and some cake the family agreed to take some family photos outside the house as a way to remember the experience. We thanked them for their hospitality and started down the street. We had already walked down the street when to our surprise both Maria Emanuela and her sister came running up to me and my colleague with a request; they wanted us to write our names down on a piece of paper so they could always remember us!

To see a child with that much confidence, a child who when born was in need of so much help, who could have been left on the fringes of society merely for the fact that she was born with a cleft lip, to see that child running and smiling and courageous, is something that I will never forget. It put so many things in perspective about not only what Smile Train did for that little girl, but what Smile Train did for her family and her community.

Maria holding her before picture

Maria holding a picture of herself before her surgery.

 

 

A Life She Never Would Have Dreamed

Jandira da Silva received cleft surgery at age 17, now she has a beautiful family and a life she never would have dreamed of

João Pessoa, Brazil — Born in a poor seaside community, Jandira da Silva grew up self–conscious and insecure. So much so that she didn’t like spending time with other people — all because she was born with a cleft lip.

Like many people in Brazil, and around the world, Jandira wasn’t aware that clefts can be repaired. When she finally discovered it was possible for her to smile like everyone else in her village, she was apprehensive. Looking back on how lonely her life had been, she chose to have the cleft surgery that her family never could have afforded. At the age of 17, her life changed forever when she had her cleft repaired. For the next few years, Jandira continued to receive free follow–up care at Smile Train partner hospital Instituto de Fissura Labiopalatal da Paraiba.

Jandira received not only a new smile, but a new outlook on life.

Today, she is married and a mother of an eight-month-old boy who is her greatest pride and joy! According to Jandira’s own words,

Before I was closed to life, if I knew, I would have married before! My husband is a good man, my son is perfect and my family is happy!”

Smile Train’s Newest Partner From Bolivia

Tiwanaku Project Pamela Wren, Smile Train’s Latin America Director, welcomes Dr. Raul Caceres (left) and his staff to Smile Train.

New York, NY — Although Dr. Raul Caceres, a plastic surgeon and director of Smile Train’s newest partner, the Tiwanaku Project in Bolivia, has a surgical practice in New York City’s luxurious Upper East Side, he still devotes much of his time and talent to his hometown.

Born in Oruro, Bolivia, Dr. Caceres knows much about the hardships members of the community, located in the Bolivian Altiplano, 12,000 feet above sea level, encounter each day. The region is home to both magnificent scenery and some of Bolivia’s poorest citizens.

“Since I was born there I know what the conditions of the people are,” Dr. Caceres said. “They have one room that is the living room, dining room, everything, and the bathrooms, of course, are on the outside.” Residents also do not have electricity, so candles and bonfires must be used for light and warmth.

As Dr. Caceres’ career started blossoming during his work at top institutions like John Hopkins in Baltimore, among many others, he started thinking of ways he could give back to Oruro. It was not until a church trip to his hometown six years ago that he knew in which way he would do so.

During the trip the group visited the hospital in Oruro which was over a hundred years old and dilapidated. One participant noticed nurses washing their latex gloves to be used for the next day. “He just couldn’t believe it. He thought this is like going back in time, like a hundred years.” That same individual challenged Dr. Caceres to use his expertise as a plastic surgeon to help the hospital.

From the beginning Dr. Caceres had the full support of his church and six years later his vision, the Tiwanaku Project was complete. During that time a new hospital was built in the middle of the complex where the old one stood and is similar to any hospital found in the United States. “It looks like it is a castle in the middle of this one hundred year-old spread out hospital with some rooms falling down,” boasts Dr. Caceres. In Dr. Caceres’ “castle” the second floor is dedicated to clefts. (The first floor houses the Tiwanaku Project’s burn center.)

Another similarity between the Tiwanaku Project and the care in the U.S. is that each cleft patient is provided with continuous, comprehensive care all year round. “We have this opportunity that we have the infrastructure and we’ll have doctors train there in this kind of work [cleft care] so care will be given in a continuous kind of way.” Dr. Caceres also adds that many other specialists important for cleft care, including ENT doctors, audiologists, and dieticians, will also be available to patients.

Dr. Caceres has spared no detail to ensure that patients and their families are provided with the best care. The Tiwanaku Project now provides parents traveling great distances to the hospital, who previously slept on the floor and ate the leftovers of their children, a bed to sleep on and a dining room to eat provided meals.

“It is a unique place,” a prideful Dr. Caceres says with a smile.
Smile Train is also proud to have the Tiwanaku Project and Dr. Caceres on board to help Bolivian cleft patients in need. Below is a message from Dr. Caceres to the Smile Train donors.

Smile Train Cleft Choir Pilot Speech Program Underway

New York, NYSmile Train Vice President of Programs in charge of Latin America, Pamela Wren, gives an update on a unique and promising pilot speech therapy program, Cleft Choirs.

Help Us Win a Grant to Expand Our Cleft Choir Program! Vote for Smile Train Cleft Choirs

The Need For Expanded Speech Therapy

Access to cleft palate surgery is life-changing for any child in need, but for some children, this is only the first step in receiving cleft care. Following cleft surgery, many are still at risk of suffering from serious speech problems. Within a few months of palate surgery, children should demonstrate speech development progress, but some children require additional support, such as speech therapy. There are a number of reasons that a child might have speech issues, including:

  • Speech patterns that developed prior to cleft surgery (aka, the child learned how to speak with an open palate – in developed countries, children receive surgery before they learn how to speak, so as to avoid speech problems)
  • Incomplete closure in the palate that allows air to escape into the nose
  • Dental and teeth issues that limit the ability to produce certain sounds
  • Ear problems that affect hearing and, therefore, speech development

Traditional speech therapy, which entails one-on-one sessions between a child and a specialized therapist, requires a long-term commitment among children, their parents, and trained speech professionals. Such resources are often not available at hospitals in developing countries — many patients never return to the hospital following their initial surgery, let alone return for ongoing speech therapy sessions. In a recent survey, Smile Train hospitals identified a lack of financial support, equipment, trained professionals, training, and patient compliance as the most critical barriers to providing speech therapy.

Help Us Win a Grant to Expand Our Cleft Choir Program! Vote for Smile Train Cleft Choirs

Addressing Speech Therapy Needs

One very innovative partner in South America recently approached Smile Train with a unique, cost-effective technique to offer speech therapy to children in need — the development of Speech Therapy Choirs! This idea is based on the fact that choir practice will bring together children in a social way to practice new sounds and tap their inner musical selves. This experience helps children to gain confidence, develop new friendships, and also tap into a communication skill that they never before were able or willing to explore! In addition to correcting their speech, this experience encourages children with cleft lips and palates to overcome any social barriers they have experienced due to problems with proper speech, and help them develop into happy and productive people!

Smile Train loved this idea from the start, and took the opportunity of the Holiday Season to offer small pilot grants to six of Smile Train’s most enthusiastic partners across the region. The grants have enabled our partners to work with musicians and therapists to oversee the practices and development of the children, reimburse parents children for their transportation costs to and from practice, and cover nominal music supplies and equipment. After only a few months of these grants being active, not only have we seen that the choirs improve speech patterns for our Smile Train kids, they have also helped the kids make new friends, sing proudly in front of their peers and communities for the very first time, and heal their inner scars to feel whole, happy and complete!

Choirs Happening Now

Brazil

Smile Train patients sing with Santa Claus

UNSELVA at Hospital Universitario Julio Muller — located in the interior of Brazil and offers care to about 100 Smile Train children a year. The team is led by head surgeon/cleft director Dr. Adalberto Novaes and speech therapist Adriana Lima Valente. They started practicing in October 2012 and just had a concert on December 7, 2012 to community members. The video shows them rocking out at the hospital entrance, with Santa Claus walking around bringing holiday cheer. You can see parents supporting their children as they learn to be proud and stand up in front of friends and community members as they sing in happiness about their new smiles.

Associação Beija-Flor-Funface at Hospital Infantil Albert Sabin — based in the north of Brazil, the poorest and most needy region of the entire country, this partner serves more 250 children with cleft lips and palates each year. They currently have a very long waiting list of patients in need of primary care. Smile Train is helping them with education grants so they can empower and train more professionals to join their team, and in turn be able to help more children. The lead surgeon is Dr José Ferreira and the speech program is run by Ms. Evelin Gondim. Their choir concert took place on December 11 🙂

Vote for Smile Train Cleft Choirs to Win a Grant From Uniqlo!

REPENSAR at Hospital Municipal Nossa Senhora Do Loreto — located on the outskirts of Rio de Janiero in a very poor neighborhood, the cleft program offers comprehensive treatment to all patients for free,
including speech therapy and orthodontics. This group loved the choir idea because it motivated the Smile Train children to return to the center to maintain their care and truly develop better speech and social habits. The director of the program is Dra Fatima Regina Almeida Brandao; the cleft program coordinator is Dra Ana Claudia Cruz; the cleft surgeons are Dr Giancarlo Cervo Rechia and Dr Luis Sergio Zanini, and the speech therapist coordinating the choir is Ms. Marinele Danieli Simões Dutra. The choir started practicing in October and put on a fantastic performance on December 17th when all of the kids in the cleft program dressed up as Christmas ornaments and trees as they happily sang in front of a large crowd!

Ecuador

Smile Train patients perform for friends and family as part of our Cleft Choir Speech Therapy program

Hospital del Día Niños de la Mano de Maria — This small partner hospital is 100% dedicated to serving poor patients with cleft lip and palate, and serves about 50 very poor families affected by cleft lip and palate each year. The families travel from across the country to the capital city to see them at their partner hospital. Smile Train is working with them to bring more awareness to people across the country about their program so they can then offer more services to more families in need. The surgical program is led by Dr Pablo Davalos and the coordinator of the team and the choir is Ms. Paty Penaherrera. The choir began practicing in October and even had an activity of practice at the local zoo! On December 17th, they hosted a choir concert where they all dressed up with Santa hats and performed for family members and friends at the hospital. The team and families are so happy about this that they are asking for additional support so they can continue to choir into the new year.

Mexico

Help Us Win a Grant for Our Cleft Choir Program! Vote Here

Hospital General Dr. Gea Gonzalez — This is one of Smile Train’s original partners globally, and over the 11 years of our partnership they have developed many innovative speech therapy projects to serve their poor population of Smile Train patients. They provide life changing surgery to about 300 poor patients each year under the brilliant surgical guidance of Dr. Fernando Molina and shining speech therapist Ms. Maria Carmen Pamplona. The speech program is very large at the hospital and even though they do provide traditional one-on-one therapies for their patients, the lead therapist, Ms. Maria Carmen, strongly believes that their new choir is helping the children make tremendous strides in their speech development and self esteem. She is so happy with the new program and really looks forward to continuing it for all patients for years to come!

Peru

Smile Train patients at choir practice as part of a unique Speech Therapy program

kusiROSTROS — This is an NGO that works with a number of Smile Train’s partner hospitals based in the capital city of Peru, Lima. Smile Train provides more than 700 surgeries across the country in one year. Smile Train’s largest and oldest partner in Lima is called CIRPLAST and is run by partner surgeon Dr. Carlos Navarro. KusiROSTROS applied for the pilot speech therapy choir grant because they have speech professionals who were very excited about the opportunity. As soon as they heard about the project, they started calling all of the Smile Train patients from Lima who are between 4 – 13 years old to see if they would be interested in joining the choir to develop their speech skills and also meet other children who perhaps are going through similar experiences of dealing with their scars and poor speech. About 40 children started participating in weekly choir practices. You can see the photographs of the kusiROSTROS team building decorating a special space for the children to meet, so they would feel welcome and at home at the site to practice and develop their new skills.

Please Help Us Win a Grant from Uniqlo to Expand Our Cleft Choir Program! Vote for Smile Train Cleft Choirs

A Special Holiday Season In Chincha, Peru

Smile Train patients and their families after free cleft surgery

Chincha, Peru — Led by Dr. Carlos Navarro, CIRPLAST, is one our best and most unique partners in providing free cleft surgery and care. While they are based in Lima, due to the lack of medical infrastructure in poorer communities in Peru, this incredible team hosts multiple cleft camps throughout Peru. These cleft camps focus on providing primary cleft care as well as follow up. The team recently returned from Chincha after giving lots of children and their families a very gift for the Holidays.

Smile Train partner surgeon Dr. Carlos Navarro with a patient after free cleft surgery

There are a total of 177,000 people living in Chincha, many living in abject poverty. In 2007, a major earthquake hit the region and 94% of all homes were destroyed or damaged as well as schools, hospitals, community centers and government buildings. Poverty conditions in Chincha worsened drastically, as the already-limited basic infrastructure and services could not meet the needs of residents. The city is still slowly recovering and children born with clefts have little hope that their families would be able to pay for cleft surgery.

But there is hope.

Through partnership with Smile Train, Dr. Navarro and his team have regular cleft camps to provide free surgery and follow up care to these children. These patients and their families will have an extra special Holiday Season filled with new smiles!

dr-navarro-patient-chincha-peru-before-after

Changing Families’ Lives In Colombia

Smile Train patient Lina and her sister after Lina's free cleft surgery

Cali, ColombiaSmile Train staff member Maryan Newbury recently visited our partner Gracia a Dios Un Niño Sonrie Foundation. While examining best practices for cleft surgery and administration to help with implementation at Smile Train’s other partners, she had the opportunity to visit patients and their families with surgeon Dr. Mauricio Moreno. Upon her return from Colombia, she shared her experience.

Accompanied by the community police, we made our way through one barrio after another, up the side of the mountain. When the police van could no longer climb the steep hill, we went by foot. Shopkeepers, children returning from their morning school session and passersby all tried to point us in the right direction, toward the home of 15-year-old Smile Train patient Lina Rivera and her family. Luckily, we met her younger brother along the way.

The Rivera family lives below a makeshift billiard hall, in a three-room cellar apartment. Electrical wiring hangs in clumps from the ceiling and one wall has mostly crumbled away, exposing the home to the elements. Nevertheless, the children’s mother beamed as she offered us a lunch of arepas and juice, expressing her deep gratitude to Dr. Moreno for the surgery that transformed her daughter’s smile.

I had brought Smile Train teddy bears to give to patients I met during my journey. All of the kids I met had grabbed them and smiled, even if they were still a bit sleepy when waking up from cleft surgery. This time, however, when I took a bear out of my bag and handed it to Lina, she simply turned and walked into the other room. Following her, I watched as Lina handed the bear to her little sister. The smallest member of the family hugged the bear tight, covered it with kisses, and gently put it on the bed. As Lina watched her sister whispering to the bear and tucking it in for a nap, I could see from the quiet satisfaction on her face that anything she receives she will surely share with her little sister.

We know that cleft surgery saves children’s lives, but it also improves the quality of life for their families and communities. When a child’s smile is transformed, she will have more to share with her family and her community throughout her life. By providing free cleft surgery, we didn’t just help Lina, we helped her whole family.

— Maryan Newbury