New York, NY — Smile 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.
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
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 🙂
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!
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.
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!
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.
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