Mariane Goes Power Of A Smile

mariane goes
Mariane Goes, Brazil, Program Manager talks about what the Power Of A Smile means to her.

What first inspired you to work with / support Smile Train?

Before working at Smile Train, I worked for Smile Train’s first partner hospital in Brazil called SOBRAPAR. I saw the wonderful and important work Smile Train was doing at SOBRAPAR, and the amount of kids having their cleft repaired due to their help. I thought to myself, what a great place to work, I would love to be part of this! My dream was to work with Smile Train, and help them to help more kids in my country… And now I’m living my dream.

What do you think the Power Of A Smile is?

Every time I see a patient, I remember how important a smile is and how important this opportunity to smile is for a child and for their families. A power of a smile… is life-changing! The power of a smile is the power to change all the bad moments that a kid has passed through her/his life to good! To happiness! They can smile now! They can be happy!!!

What has the Power Of A Smile done for you in your life?

I know there is still so much left to do, so many children left to help, and I’m more thankful for our perfect life. Helping people doesn’t always mean donating money, we can all donate a little time to help someone in need.

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.

 

 

Journey of Smiles: Brazil

Four-year-old Bianca Lima before her Smile Train cleft surgery and three months after.

Four-year-old Bianca Lima before her Smile Train cleft surgery and three months after.

Salvador, BrazilSmile Train staff member Caity Roarke recently visited Hospital Santo Antonio a Smile Train partner hospital in Salvador, Brazil. While there Caity was able to meet Bianca and observed the quality cleft care provided to this young patient. She shares her experience below.

Bianca Lima received her first surgery to repair her cleft lip at Hospital Santo Antonio in Salvador, Brazil, on July 10, 2013. When I met her last month, she had just turned four and was back at the hospital for a series of aftercare visits. In one day and in one building, she was cared for by a social worker, a speech therapist, an orthodontist, her surgeon and a psychologist.

Every day Hospital Santo Antonio sees patients for everything from pre-screening for surgery, to speech therapy and orthodontics. The facilities at the hospital allow for continuous and accessible after care for past patients as well as those who received surgery at another hospital. Their main waiting area is a circular ‘one-stop-shop’ where patients can see as many as eight different practitioners all in one day. This is especially important to those patients, like Bianca, who have to travel miles and miles in order to see these doctors and get the appropriate care after their cleft surgery.

The last time Bianca was at the hospital she had come for her Smile Train surgery. Before the surgery she never spoke. On the day I met her, she met with a speech therapist to come up with a plan to expand her language. Bianca then met with a psychologist to help her become more comfortable engaging with others.

While she is still a bit shy about speaking, she instantly lit up around the other children in the waiting room and spent the entire afternoon playing games and interacting with everyone around her, laughing and smiling the whole time.Bianca is just one of the many examples of how essential aftercare can be and what a profound effect it can have on children’s lives beyond one 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 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 Note of Thanks From the Mother of a Smile Train Patient

Smile Train patient Lucas before and after receiving excellent cleft care

Curitiba, BrazilA 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.”