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TRANSFORMATIONS

Stories of Comprehensive Multidisciplinary Cleft Lip and Palate Care

By Transformations

February 2^nd, 2015

Transformations: Stories of Partnership, Resilience and Positive Change in Peru is a collaborative photojournalism project intended to increase dialogue and further understanding of international partnerships that address complex global challenges. Through individual and organizational stories the Ontario Council for International Cooperation (OCIC) invites viewers to actively engage in a new narrative on international cooperation and solidarity.

This narrative is rooted in the Istanbul Principles for CSO Development Effectiveness, a set of mutually shared values guiding the development work of civil society organizations (CSOs) worldwide. These include to: respect and promote human rights and social justice; embody gender equality and equity while promoting women and girls’ rights; focus on people’s empowerment, democratic ownership and participation; promote environmental sustainability; practice transparency and accountability; pursue equitable partnerships and solidarity; create and share knowledge and commit to mutual learning; and commit to realizing positive sustainable change.

Through this stream of the exhibit we invite you to learn firsthand about the work of Transforming Faces and KusiROSTROS to provide comprehensive multidisciplinary cleft lip and palate care for children.The stories presented were documented by OCIC and Allan Lissner, Praxis Pictures, during a visit to Peru in November 2014. We extend our deepest gratitude to our organizational partners and to the many individual people that shared their experiences, and their lives.

This initiative was undertaken with the financial support of the Government of Canada provided through Foreign Affairs, Trade and Development Canada (DFATD).

Transforming Faces works to empower local multidisciplinary medical teams to provide free comprehensive cleft lip and palate care for children and adults in Peru, Argentina, Ethiopia, Ghana, India, Laos, Nigeria and Thailand. Core to its work is the understanding that cleft lip and palate, a common birth anomaly, can be successfully treated through a comprehensive multidisciplinary approach. Transforming Faces’ goal is to close the gap in cleft care by enabling each patient to lead a productive life, empower care teams, measure outcomes, facilitate research, and empower and guide families through information and guidance provided by a local strategic partner. To do this they fund, collaborate, consult, and train local cleft teams that include audiologists, dentists, nurse coordinators, orthodontists, social workers, speech therapists and surgeons.

Transforming Faces encourages medical professionals to practice in their home countries, and builds the capacity of health systems to improve the quality of life of their citizens. Since January 2012 Transforming Faces and KusiROSTROS have been working together to provide decentralized comprehensive cleft care at five Community Rehabilitation Centres (CRCs) in impoverished, peripheral areas of Lima, Peru.

Maria Teresa Torres Morales, KusiROSTROS’ Executive Director, says of the formation of the partnership: “I found Transforming Faces online, and wrote to them. I wanted to have everything right away. I especially wanted a fully equipped ears, nose and throat (ENT) clinic, because I had learned by that time that this is what the children needed. Esteban Lasso read the project and said, ‘Yes, I love the project, but we can’t give you the ENT clinic.’ At first I didn’t understand, but while talking to Esteban we learned that he saw other needs the children had, before talking about an ENT clinic. So what Transforming Faces helped us do was to develop a working model to organize multidisciplinary services, help us with the administrative workflow, and also help us with project management so it was good. It started growing, and we started having money for different things. We were able to rent an office space and to pay ourselves. And day by day, things started changing.”

The KusiROSTROS and Transforming Faces program was designed to mitigate many obstacles, including geographic distance, allowing low-income families better access to quality treatment close to their homes. Considerable reduction in transportation, waiting time, and savings are by-products of this initiative and help to ensure that patients have affordable access to the full range of information and care they require to lead productive and dignified lives. Through this partnership KusiROSTROS is able to offer comprehensive cleft care, and to provide hospital referrals for surgeries and follow up, as needed. This partnership has also helped to optimize local resources, as underutilized infrastructure in health posts have been brought to life, and Peruvian government funds have been leveraged to maximize those sent from Canadian donors.

Christopher Eduardo Escobar, 6, has been participating in KusiROSTROS programs for four and a half years, and shows positive self-esteem and social acceptance.

Cleft lip and palate is one of the most common birth anomalies in the world and can be successfully treated using a comprehensive approach. “We didn’t know anything about cleft until Christopher was born,” says Christopher’s mother, Amanda, “and I was actually shocked by it when I saw him. When I gave birth to him I rejected him at first, but his father was really supportive and he used to tell me, ‘Don’t worry, we’ll do some research and figure this out.’ So we got surgery for him, and then another surgery with another team where someone mentioned a place that might be able to help us. That’s how we got to know KusiROSTROS. Christopher was a year and a half then. KusiROSTROS was really helpful with everything, and Christopher is now just a happy kid.”

Christopher Eduardo Escobar, 6 (centre, right), plays with his friends at I.E.P Pedro Ruiz Gallo School before his mother, Amanda, and six month old brother, Santiago, pick him up to attend his weekly appointments at KusiROSTROS.

The implementation of the Community Rehabilitation Center (CRC) network has helped reduce average travel distances for families to access comprehensive cleft care from two hours, to twenty minutes.

Christopher and his two brothers live with their mother and grandparents in Huaycan, on the outskirts of Lima.

Parents participate in workshops and benefit from discussion with other families while their children play and wait for their therapies and appointments at a KusiROSTROS Community Rehabilitation Centre.

Karen Nicole Canchari Escobal, 7 (left), and Antonella María del Carmen Pasache Ecos (right) play at a KusiROSTROS Community Rehabilitaiton Centre.

KusiROSTROS staff spend a lot of time facilitating reflection about acceptance with parents. If children with cleft are not accepted at home, it is harder for them to accept themselves and to be accepted by others outside their home. It is important that parents play an active role in creating a supportive environment throughout the process. The trust that is established between parents and staff is also important to ensure a low drop out rate among patients.

Psychologist Giovanna Lobaton Delgado shares her motivation for working with KusiROSTROS: “I’ve been volunteering off and on with KusiROSTROS for four years. What motivates me is that I was born with cleft myself. I was actually very lucky; my parents were very open and what I think my parents gave me was ‘love therapy.’ My parents never saw my cleft as a problem. They saw it as a feature, a characteristic, which is something I tell parents: ‘Don’t look at it as a problem; it’s just a feature of your child. If you see it as a problem then the child becomes a problem.’ That’s something that I lived through so I know how important it is. And now I want to help KusiROSTROS give what I received, to others.”

Comprehensive cleft care improves children’s physical and psychological health dramatically. Speech therapist Renato Torres Calle (right) teaches two year olds Franco Alejandro Buendia Sanchez (left), and Jesus Alonso Trucios Pipa (centre), how to enunciate vowel sounds at a KusiROSTROS Community Rehabilitation Centre.

Every two and a half minutes a child is born with cleft lip and palate (CLP). While cleft lip and palate is not a problem of the poor alone, access to adequate care is. There is still a common misperception that CLP can be fully treated with just one surgery. While surgery is critical, there are 15 to 20 years of other multidisciplinary health interventions required to treat CLP patients. Without this support patients experience difficulty with chewing, speaking, in their facial growth and development and in their social development. These challenges are readily addressed through speech therapy, orthodontics, dental care, ENT treatment, reconstructive surgery and psychological support.

Nurse Yovanna Picon Caballero with Andre Marcelo Karlo Valdivia Silva, 7 (left). Dentist Fiorella Gladis Norabuena Aramburucon with Andre Marcelo Karlo (right).

“This treatment takes many, many, years,” explains Esteban Lasso, Executive Director of Transforming Faces, “but having someone to accompany you through the process is worth the world. For most patients, treatment begins at birth and continues until they are in their teens.”

Kelly Aguirre Prado, Christian’s mother, Christian Aguirre Prado, 4, and his Great-Grandmother, Luisa Balboa.

“When I saw Christian for the first time it was very shocking, and it was a struggle to try to feed him. Nobody told me anything. I tried breastfeeding and the bottle. I didn’t know what to do. Our family was the one who gave me the strength to continue because I was very depressed, but they told me, ‘No it’s okay, we can do it.’ They gave me lots of support,” says Kelly.

“Christian had surgery before we found out about KusiROSTROS. He has had four surgeries in total. The first two were not done well, and nobody gave me any kind of information. When we went to the hospital they said, ‘No, this is not right.’ So they had to undo the two previous surgeries and operate on him twice. That was when someone gave us a brochure about KusiROSTROS.”

Christian has already had four surgeries. “At the hospital we went to before they wouldn’t let me in,” says his mother, Kelly. “He was very young so it got very complicated. I would sit and wait, and sometimes he would come out crying. It was different; the people at KusiROSTROS are just better. It’s a happier environment, and we do everything together.”

Christian Aguirre Prado, 4, at home (left) and with his mother, Kelly Aguirre Prado and grandmother, Herlinda Prado (right).

“Christian really enjoys going to Kusi,” says Kelly, “because everyone is nice to him and he loves to participate. It has all been very tiring but I feel very happy now, because I see him making progress.”

Pia Luana Gutierrez Gonzalez, 3, and her mother Marlene Elizabeth Gutierrez Gonzalez.

When Pia was born, Maria Teresa Torres Morales, Executive Director of KusiROSTROS, and some physicians visited Marlene and Pia in the hospital and gave them information about cleft, and brochures about KusiROSTROS. They explained that this would be a long process. After the surgery Marlene called Kusi and soon after they became patients. They now go there every Friday and have been very happy with the progress Pia has made as a result.
“The speech therapist always congratulates us,” says Marlene, “because of the progress she is making. And I tell them, ‘We did this, and we did that…’ and the speech therapist says, ‘Yes, we can tell, because you cannot lie to us. We see Pia, we see her progress, and that you have been working with her.’ So I’m really, really, really happy with Kusi. I really didn’t think that Pia could make it at the beginning, but now I see it’s really possible. Now she speaks normally, which is what I always wanted.”

KusiROSTROS hosts its 4th Annual Health and Education Day for families of children with cleft lip and palate at one of its Community Rehabilitation Centres (CRCs) in San Martin de Porres, in November 2014.

The KusiROSTROS Health and Education Day event brought together the local cleft community to raise awareness about the importance of a comprehensive multidisciplinary approach to cleft care. Over 400 children and parents participated in face painting, a drawing and painting contest, live music, and arts and crafts classes. New patients received health evaluations in each cleft care discipline including surgery, nursing, dentistry, speech therapy and psychology.

On the same day, KusiROSTROS and Transforming Faces launched an exciting new partnership with the dental clinic of the Faculty of Stomatology at the Peruvian University Cayetano Heredia (UPCH), and the national teaching hospital Cayetano Heredia. The state-of-the-art UPCH facility now hosts a Comprehensive Care Centre and serves as a Dental Referral Centre for more complex cases.

Dr. Fabiola León-Velarde, UPCH’s Director, and Dr. Fernando Salazar Silva, Dean of the Faculty of Stomatology, cutting the ribbon of the new center with state-of-the-art surgical room.

This ribbon-cutting ceremony marked the inauguration of the surgical room at the Peruvian Cayetano Heredia University (UPCH), and official presentation of a new Comprehensive Care Center created as a result of a new alliance between UPCH, KusiROSTROS and Transforming Faces to strengthen comprehensive multidisciplinary cleft care in Peru.

Past and present members of the Faculty of Stomatology and dental clinic present at the ceremony (left). Maria Teresa Torres Morales, KusiROSTROS Executive Director, Esteban Lasso, Transforming Faces Executive Director, and Caridad Hidalgo, Vice-President of the Peruvian Cleft Lip and Palate Association witnessing the event (from far right).

The state-of-the-art facility at the dental clinic in the Peruvian Cayetano Heredia University now hosts a new KusiROSTROS Comprehesive Care Center that also serves as a Dental Referral Centre for more complex cases.

Juan Carlos Cuadros Palomino, 6, undergoing a nasofibroscopy exam to access his palate.

Dr. Freddy Gutierrez, Chief of the Academic Department of Oral-Maxillofacial Surgery, Dr. Martha Lopez Pinedo, Coordinator of Inter-Institutional Relations, Dr. Fernando Salazar Silva, Dean of the Faculty of Stomatology and Chief of the Department of Medicine and Maxiofacila Surgery, Esteban Lasso, Executive Director of Transforming Faces, Maria Teresa Torres Morales, Executive Director of KusiROSTROS, and Caridad Hidalgo de Mori, Vice President of the Peruvian Cleft Lip and Palate Association share remarks on the significance of the new alliance with the Peruvian Cayetano Heredia University (UPCH) (from far left to right).

This alliance seeks to provide multidisciplinary comprehensive cleft care in Peru, and to develop as a Centre of Excellence and learning, globally. “This is important for us,” says Esteban Lasso, “because this Center can provide another option for parents to be able to receive comprehensive multidisciplinary care… including access to quality service and by professional and specialized personnel. The added value here is teamwork. Even though teamwork sounds very good in itself, it is a revolutionary concept because it involves putting aside your opinions and your egos, and listening to what others can contribute while looking after the best interest of the children and their families.”

Dr. Fernando Salazar notes: “The vision of the university, among many things, implies it is centered on the person. We are dentists and orthodontists but we do not see teeth. We do not see a child with cleft. We do not see a palate in itself. We see people, people who have a certain type of need… All of us are going to work for that purpose from our standpoint.” “Looking forward,” he says, “We want to become a model of care and we want to focus on research, to see how to answer some of the questions we have. I believe working together will allow us to find the answers for many things, so this is one step forward into solving this worldwide problem.”

Maria Teresa Torres Morales awaits the arrival of Shirley Tamanimoriet, 6, and her grandmother, Maria Antonia, following the KusiROSTROS 4th Annual Health and Education Day event at Cayetano Heredia University (left). Shirley. Maria Antonia, Maria Teresa and Sandra Aranda Del Castillo leave the airport (right).

Grandmother and granddaughter have traveled from a remote community in the Amazon jungle for their first visit to Lima to access cleft care. Maria Teresa and Sandra accompany them to the home of Leonarda Gavancho, where they will stay during Shirley’s assessment and first surgery. For Shirley and Maria the journey from Patria Nueva has been long. First they had to take a boat from their home to San Lorenzo, then they flew to Urnagas, then they took a car to Tarapoto, and from Tarapoto they flew to Lima. This was their first time on a plane.

The next morning during an interview with OCIC, Maria Antonia says she wants pictures taken and she wants their story known because she wants the kids in the community to know there is hope, and that there is something that can be done. “I just want her to have a normal life,” says Maria Antonia. “That’s why we decided to come here. There is a doctor in San Lorenzo who told me about free surgeries in Lima, and the people around our community were asking: ‘How are you going to go? You don’t know anyone there; you don’t know anything. It’s all unknown territory.’ But I stopped listening to the bad things and I said, ‘Well, we are in the hands of the doctors and in the hands of God, and we’re going to try!”

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Martha Espinoza (left), a social worker with KusiROSTROS, welcomes Shirley Tamanimoriet to Lima the morning after her arrival from Patria Nueva, in the home of Leonarda Gavancho. Leonarda (right) receives guests like Shirley into her home as a form of community and religious service.

“The first thing we try to do is build trust because it’s really important. They feel at a loss, they‘re alone, they don’t know what to do… So we try to generate trust and from then on we are with them all the time. We accompany them to the different things and hold their hands through the whole process,” Sandra Aranda Del Castillo says.

Maria Teresa Torres Morales plays with Shirley Tamanimorieton her first morning in Lima (above and below). Shirley has traveled from a remote community in the Amazon jungle with her grandmother for the first time in order to begin to receive cleft care, with KusiROSTROS’ support.

Without access to adequate information and treatment services children with cleft lip and palate suffer from lifelong difficulty speaking, hearing, eating, and in their social development. They are often ostracized by their communities and even by their immediate families due to limited public awareness of the issue. Where care is available it can be too expensive, limited to surgical operations, or not accessible to those that live outside of major city centers. These are some of the fundamental challenges KusiROSTROS and Transforming Faces work together to address.

Maria Teresa describes the relationship between Transforming Faces and KusiROSTROS as ‘strategic partners’. “They do help us with resources and training and advice,” she says. “And it is possible to be strategic partners because we have the same feeling of what our ultimate goals should be. We seek to provide comprehensive quality treatment to children with cleft and their families, and we strive to provide quality treatment with warmth. These common goals help us to find solutions and answers for parents, throughout the journey we share together.”

“Transforming Faces does not tell us what we should or should not do,” Maria Teresa explains. “Together we find ways to conceive solutions. Also, through this partnership we understand that this help is not just for the child. Families are involved, and we help the families because this is a very complex anomaly. We might see this as just a health issue but in fact it involves the social part, the school; there is rejection, it is different if the child is a girl or boy. It is different for every case, so it’s a process, and really we work together as a team to solve the problems that we have.”