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 Smile Years in the Making

Xi’an, China – For some people four years is a short period of time. For a surgeon four years is not time enough to achieve his degree. For Smile Train it is just a third of the time since it began providing cleft surgeries in China. However, for a child with a cleft, four years can change his fate. Four years helped Hua Tai’an and his family get through sadness and helplessness to happiness and hope.

Hua Tai’an was born in July 2006 with both a cleft lip and a cleft palate in Xianyang City, China. Not long after his birth, Hua’s father began to seek treatment for his son. The family used all their savings to pay for Hua’s cleft lip surgery, which still left Hua’s nose slightly misshapen. They had no money left to afford surgery to repair his palate. Luckily, not long after, Hua’s father learned of free cleft surgeries being provided at Smile Train’s earliest partner hospital in his province—Stomatological Hospital of Xi’an Jiaotong University.

The hospital’s staff was struck by the appearance of father and son when they arrived at the hospital. The child was beautiful, while the father was old, with long and shaggy hair. He seemed to be very poor. Despite making the journey with his son to the hospital, Hua’s father was still skeptical that surgery could be free in such a large hospital in a big city like Xi’an, especially because the first surgery had cost his life savings. The doctors told the father that, “Smile Train pays for you so that you can enjoy the free surgery.” The father was still rather in doubt about this, but allowed the surgery to be done.

On July 8, 2008, Hua Tai’an, who was now two years old, received a successful surgery to repair his cleft palate.

Hua Tai'an at two years old.

Hua Tai’an at two years old.

As time passed after the surgery the father found that his child was still unable to play with other children because Hua was unable to speak clearly. He was very concerned for his son. In 2010 the hospital invited the boy and his father to a speech language camp for cleft palate patients.

At the camp Hua and his father took part in the activities with the other patients and their families. Despite being with other cleft patients like him, Hua was too shy to look up or speak. His father said the poor appearance of his son’s nose was to blame. The team at the hospital recommended a second surgery to revise the cleft lip repair and help with Hua’s speech. Hua’s father was even more worried than during his first visit to the hospital. His concern was again about the surgery’s cost. The doctor’s explained to him that he need not worry because Smile Train would once more fund the treatment as well as transportation fee to and from the hospital for both him and Hua.

After many months spent debating another surgery, Hua’s father permitted surgical treatment for his son. On February 10, 2012, Hua was operated by the same surgeon who originally treated his cleft palate. The surgery was a great success and Hua was discharged from the hospital on schedule.

During one of Hua’s follow-up visits in November 2012, doctors thought that another child had entered their office due to his beautiful smile. Hua had made wonderful progress. He spoke confidently to all the staff and proudly shared his academic achievements.

Hua Tai’an, in primary school at grade one. He now has made great academic achievements and good friends.

Hua Tai’an, in primary school at grade one. He now has made great academic achievements and good friends.

Even the father’s smile had noticeably grown. He said his son had been much more cheerful, as if Hua was a different person. The difficulties of the past four years had disappeared. The father proudly displayed all the materials associated with his son’s years of treatment. Doctors were inspired when they noticed “pass cards” of the speech treatment camp that the father had cherished, but was so common to them. Hua’s father finally found that his son could be as outstanding as other children, if not more.

The team at Stomatological Hospital of Xi’an Jiaotong University was grateful and happy as well. Throughout the past four years the father had worn the same clothes every time he visited the hospital and under such difficult economic conditions the hospital staff was unsure how long the family’s persistence in treating their son could last.

It took the hospital staff a bit of time to consider what was the key to Hua’s and their success. They wrote to Smile Train this conclusion:

“Without the support of such a strong foundation, Smile Train, we couldn’t have persisted on for four years with a single patient. The poor families couldn’t have afforded the expensive surgeries many times. Without Smile Train, the team approach to cleft care wouldn’t have such development or scale as today. Without the thirteen years of Smile Train in China, how could we have seen the smiles of children with cleft lip and cleft palate?”

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

Smile Train Speech Therapy Summer Camp in Mexico

Mexico City – As many families and patients know, in many cases repairing a cleft palate is only the first step. Within a few months of cleft palate surgery, most patients demonstrate speech development progress, but some children require on-going speech therapy. If a palate is repaired before the child learns to talk, the need for speech therapy drastically decreases, however, the older the patient, the harder it is to change the speech after the surgery. The reason is that with a cleft palate, the child learns to speak differently attempting to make the sounds that he or she hears. When the palate is repaired after the child has learned to speak already, the child needs to relearn to say certain sounds that were affected by the cleft palate. Over the last few years, one of Smile Train’s goals has been to find a way to effectively and efficiently provide speech therapy to our patients that need it in order to lead normal lives. An innovative approach to speech therapy is being led by long time Smile Train partner Hospital General Dr Manuel Gea Gonzalez.

Traditionally, speech therapy is conducted in 45 minute sessions twice a week for months and even years. María del Carmen Pamplona has created a Speech Therapy Summer Day Camp for poor patients from in and around Mexico City who are unable to routinely visit speech therapists. Last year’s day camp served 66 patients 4 days a week for 3 weeks and saw improvements in their speech equivalent to 8-10 months of a regular speech pathology schedule. For these very poor children, they had the added bonus of a field trip to visit their favorite soccer stars and the local zoo – a treat they would never have been able to experience.

The results of the camp have extended into the classroom for the majority of the campers such as Ana Sofia. After she had her palate repaired, six-year old Ana started school, but because she was still having difficulty speaking properly, she had trouble making friends, learning, participating in class, and her self-esteem and life suffered. Because she lived too far away from any speech services that her parents would never have been able to afford, she moved in with her uncle and attended the day camp. In just 3 weeks, she was able to learn and play with other children who had the same difficulties and saw dramatic improvements in her speech. After the camp, her parents were given exercises for her to practice and her teacher sent the camp a letter explaining the difference in Ana’s schooling and life: she has grown assured in herself, always eager to suggest her ideas and raiser her hand for questions and has become one of the most popular kids in her class because of her friendly manor. This from a girl who a year before was embarrassed to go to school.

The Hospital General Dr Manuel Gea Gonzalez Speech Therapy Day Camp also serves as an intensive training workshop for speech pathologists. Last year’s camp further trained 47 speech pathologists who are all eager to take what they have learned to their own cities. This year’s camp starts up this July!

Be sure to check out the pictures from last year’s camp:

This slideshow requires JavaScript.