Smile Train’s Newest Partner From Bolivia

Tiwanaku Project Pamela Wren, Smile Train’s Latin America Director, welcomes Dr. Raul Caceres (left) and his staff to Smile Train.

New York, NY — Although Dr. Raul Caceres, a plastic surgeon and director of Smile Train’s newest partner, the Tiwanaku Project in Bolivia, has a surgical practice in New York City’s luxurious Upper East Side, he still devotes much of his time and talent to his hometown.

Born in Oruro, Bolivia, Dr. Caceres knows much about the hardships members of the community, located in the Bolivian Altiplano, 12,000 feet above sea level, encounter each day. The region is home to both magnificent scenery and some of Bolivia’s poorest citizens.

“Since I was born there I know what the conditions of the people are,” Dr. Caceres said. “They have one room that is the living room, dining room, everything, and the bathrooms, of course, are on the outside.” Residents also do not have electricity, so candles and bonfires must be used for light and warmth.

As Dr. Caceres’ career started blossoming during his work at top institutions like John Hopkins in Baltimore, among many others, he started thinking of ways he could give back to Oruro. It was not until a church trip to his hometown six years ago that he knew in which way he would do so.

During the trip the group visited the hospital in Oruro which was over a hundred years old and dilapidated. One participant noticed nurses washing their latex gloves to be used for the next day. “He just couldn’t believe it. He thought this is like going back in time, like a hundred years.” That same individual challenged Dr. Caceres to use his expertise as a plastic surgeon to help the hospital.

From the beginning Dr. Caceres had the full support of his church and six years later his vision, the Tiwanaku Project was complete. During that time a new hospital was built in the middle of the complex where the old one stood and is similar to any hospital found in the United States. “It looks like it is a castle in the middle of this one hundred year-old spread out hospital with some rooms falling down,” boasts Dr. Caceres. In Dr. Caceres’ “castle” the second floor is dedicated to clefts. (The first floor houses the Tiwanaku Project’s burn center.)

Another similarity between the Tiwanaku Project and the care in the U.S. is that each cleft patient is provided with continuous, comprehensive care all year round. “We have this opportunity that we have the infrastructure and we’ll have doctors train there in this kind of work [cleft care] so care will be given in a continuous kind of way.” Dr. Caceres also adds that many other specialists important for cleft care, including ENT doctors, audiologists, and dieticians, will also be available to patients.

Dr. Caceres has spared no detail to ensure that patients and their families are provided with the best care. The Tiwanaku Project now provides parents traveling great distances to the hospital, who previously slept on the floor and ate the leftovers of their children, a bed to sleep on and a dining room to eat provided meals.

“It is a unique place,” a prideful Dr. Caceres says with a smile.
Smile Train is also proud to have the Tiwanaku Project and Dr. Caceres on board to help Bolivian cleft patients in need. Below is a message from Dr. Caceres to the Smile Train donors.

Donors Visit Smile Train Partner In Mongolia

A Smile Train patient sleeps peacefully while visiting for free cleft care

Ulaanbaatar, Mongoliarecently Smile Train supporters Dieter and Martha Faber were in Mongolia and were able to visit one of our partner hospitals. While they were there, they met with Smile Train doctors Ayanga G and Erdenes Aikhan as well as patients and their families coming in for free cleft surgery and follow up care. They sent us this nice letter about their experience that we’d like to share.
Smile Train donors dieter and martha faber witnessed free cleft care in Mongolia
Dieter and Martha Faber saw Smile Train provide free cleft surgery and care

Years After Surgery, A Thank You From Ribhalin

New Delhi, India We recently received a message on Facebook from one of our former patients, Ribhalin, a young woman from India. In 2008, Ribhalin received free cleft palate surgery from Smile Train partner surgeon Dr. Werlok Kharshiing and his team at Woodland Hospital. Over the Holidays she sent us a sweet thank you note. We asked her how she has been since her surgery and she kindly allowed us to share her story [emphases in her message are our own].

former Smile Train patient Ribhalin before her free cleft palate surgery

Former Smile Train patient Ribhalin before her free cleft palate repair in June of 2008

I was born with a secondary cleft palate. As I was the first child, my parents got scared to get my operation done. When I was a child, most of the time I was sick due to the high risk for respiratory tract infection and I had difficulty while eating food. I went to school and my teachers, friends, neighbours, and relatives teased me for the way I talked and most of them didn’t like to talk to me. Because of this, I always had an inferiority complex and cursed myself.

But it was in 2008 when I met Dr AC Phukan and Dr Valarie from NEIGRIHMS. They encouraged me to get my operation done. I was 22 at the time. I told my parents, but my parents refused because they were daily labourers and we didn’t have money even to eat. How will they get my operation done in a costly hospital? For myself I wanted to because I wanted to be normal, I didn’t want to get rejected again and again when going for my interviews or while talking to others.

Thanks to Dr Phukan and Dr Valarie. They took me to Smile Train where they explained I didn’t have to pay for the operation. My parents agreed and in June 2008, I had my operation. After my cleft operation, I was free from infection and had no problem while eating food and people could understand what I speak. Thank you so much Smile Train for helping me.

I’ll be happy to share my story with the people who support me and especially the people who have cleft lip and cleft palate like me so that we will have a new life again. At present, I’m a nurse working in a private hospital. It was hard for me to get admission anywhere — they took me as handicapped before my surgery. Thanks to Smile Train for my operation so that I can be like other people and now I’m working happily as a nurse, and having a great future.

Thank you Smile Train for helping me. May God bless every member of Smile Train. You have really changed our lives 🙂

Ribhalin

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 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

Words of Thanks from Chhengy’s Father

Smile Train patient Chhengly Hor before and after free cleft surgery

Phnom Penh, Cambodia — Chhengy Hor was born with a cleft lip and palate in April of 2011. She was lucky to be born into a loving family that was determined to take care of her no matter what. In a few months, Chhengy had her lip repaired at Smile Train partner hospital Monorom Clinic led by Dr. Nous Sarom. Our great partner team repaired her cleft palate when she was 10 months old. Her family has stayed in touch with Smile Train and her father Khykeng sent this note to the head of our programs in Cambodia:

Chhengy now is 19 months old, she has grown up healthy and strong. Now she is 11kg in weight.
She had her first plate surgery on February 17, 2012 in Phnom Penh. She
expect to go through the second palate surgery early next year. She eats well, she can eat porridge, rice, and more things like other kids. We still continue feed her formula milk with special nipples. Just early this month, she able to walk more confident with her walking. She learn to walk with support a few months ago. She has grown about 10 teeth.
I am pleased to share a photo of her. The photo was shot when she turn one year old.
Many thanks to you and Smile Train for support and thank you very much Dr. Sarom for your effort and care.
We are wishing you all the best.
Khykeng and family”

On behalf of Chhengy, our other patients, all of their families, and everyone here at Smile Train, thank you for helping us change the world, one smile at a time.

One Big Happy Family

Mr. Nyawenda and his four children all had cleft lips, and they all received free Smile Train cleft surgery

Bujumbura, Burundi— As part of our STOP Clefts Burundi program, our partner Surgical Centre Smile Train Mbarara traveled from Uganda to host a free cleft surgery camp and help develop a local medical team to provide the surgeries themselves. Of the many patients to receive free cleft surgery, Mr. Nyawenda and his family certainly stand out.

Mr. Nyawenda is a security watchman at a facility in the capital. Having lived with an unrepaired cleft lip his entire life, when a friend told him that Smile Train was providing free cleft surgery, he was ecstatic but, at the same time, saddened.

When he arrived at the camp, he pressed to have his operation as quickly as possible since he would lose his job if he stayed too long. The medical team soon discovered that his mixed emotions about his upcoming surgery were not just from the fear of losing his job. Mr. Nyawenda’s four children aged 17, 9, 5, and 2 years old were all born with cleft lips.

The doctors asked why he did not bring his children with him. He sadly admitted that they were in his village over 120km (75 miles) away. He hadn’t seen them for a long time and he didn’t have the money to go get them. Within hours, our Smile Train partner had a car pick the children and Mom up and they were on their way to the hospital.

After lots of hugs and a happy a reunion, the children were examined and cleared for surgery. When their sutures heal and the swelling goes down, Mr. Nyawenda, his wife, and their four children will have plenty to smile.