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.

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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.

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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 🙂

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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

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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

82 Years Young and Happier Than Ever

Tarma, Peru We recently received this update from our partners at CIRPLAST, Dr. Carlos Navarro and his wife Elvira, about Emilia Solorzano de Estrella who underwent free cleft lip surgery at the age of 82.

82-year-old Smile Train Patient Emilia with Dr. Navarro and team before and after free cleft lip surgery

“Emilia Solorzano de Estrella is a very pleasant 82 year-old lady, who was born with a cleft lip in Acobamba, Peru; in an anex town called Buenos Aires, near Huancayo. She never attended school.

“She lived with her parents until she was 30, and then she married at age 35 in a small town near the jungle, called La Merced, in the Chanchamayo district. She had only one son. She lived all of her adult life in the jungle until 1996, when she returned to her birth town near Huancayo. She is very active and still takes care of her 90 year old blind husband and her home: carrying wood for the stove daily.

“Many times she has wanted to fix her cleft lip, but never trusted doctors, because she was afraid she could die during surgery, and also because she was very poor and could not afford the expense. Plus doing the surgery in the jungle was almost impossible.

“Her married son has 4 children and lives with his family next door. Eventually, they heard of the Smile Train – Cirplast mission on the radio, and her son brought her to us in Tarma.

She was eager to have the surgery to fix her lip, and insisted that she only wanted “the lip put together” as she demonstrated by pinching her two lip segments together. She also wanted to have the surgery as soon as possible. We had all the tests done, and did her surgery at the beginning of our 120th mission (the fourth one in Tarma). The surgery was successful and she is now ‘the happiest and prettiest woman in the world’ and sends her blessings to the CIRPLAST team and to her ‘angel,’ Dr. Navarro.”

— Elvira Navarro

Overcoming a Family’s Fears to Give Florcita a New Smile

Smile Train patient Florcita before and after free cleft lip surgery

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.

Smile Train Update from Dr. Navarro in Peru

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.

Smile Train patient 6 month old Saul Hinostroza before free cleft lip surgery

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

Smile Train patient Saul Hinostroza after free cleft surgery.

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.

Lightning Strikes and Breaking Superstitions

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.

Smile Train patient Jhon Aguilar before free cleft lip surgery

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.

Smile Train patient Jhon Aguilar after free cleft lip surgery

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.

Smile Train patient JhonAguilar after free cleft lip surgery and his mother

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.

Cleft Surgery at 10,000 Feet

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.

CIRPLAST Smile Train Team

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.

Road to TarmaThe 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.Cleft Palate Surgery After Thank you to all of our partners and donors who provide so many new lives.