Meet Rachaneekorn

July 24th, 2014 by

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Rachaneekorn Wimonrat, from the Mae Jan District of Chiang Rai province, was born with a cleft lip and palate in another province in Thailand.

Rachaneekorn 1 Rachaneekorn 2 Rachaneekorn 4

She was brought to live with her grandmother in Chiang Rai shortly after her birth. Her lip was repaired when she was 4 months old and her palate was repaired when she was one and a half years of age.

Now at age 9, Rachaneekorn attends the Thai speech camps with her grandmother, Ms. Saengda, who makes snacks and herbal drinks for sale in the Mar Jan District.

Ms. Saengda has volunteered to cook alongside the patients and make local snacks from rice flour, coconut, green bean. The children really enjoyed making these snacks.

Apart from being a distraction for the patients, it also serves to educate attendees about proper nutrition and serves as a way to bring patients together to share their experiences.  Nutrition is an important component of proper development and preparedness for cleft care, so our partner thought this was a great way to bring patients together while also talking about nutrition.

On hand at this camp was a nutritionist and a nurse from Overbrook Hospital, as well as Ms. Tanyaratch, a social worker from NWDF, who facilitated a discussion about proper nutrition during pregnancy.


Meet Luciano

July 22nd, 2014 by

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Born with a unilateral complete cleft (on the left side),  Luciano Avila underwent his first lip surgery at 11 months old and the second palate surgery occurred when he was five. 

Débora  Herrera said that she did not know her son had a cleft because no trace of it appeared on the ultrasound. However, there is a history of cleft in the family. She was initially scared in the delivery room because they wouldn’t let her see her baby but she eventually was allowed to see him and accepted him fully.

His surgery was delayed, initially, because there were a lack of available practitioners and shifts at the Children’s Hospital.

He is now eight years old and the family visits Fundacion GAVINA in Argentina for support. 

LUCIANO


Thai Speech camps: Update

July 17th, 2014 by

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There is a shortage of speech pathologists and audiologists in Northern Thailand. As a result, many children do not receive this much needed care. 

In 2012, TF and Smile Train co-supported speech and dental camps to help children in this underserved area access speech therapy and dentistry services.

In 2013, Speech Camps continued to provide decentralized speech therapy, as well as oral health education for children and adults affected by cleft in the rural regions of Thailand and Laos.

Over two years, 18 patients from distant communities received speech therapy with the support of speech language pathologists (SLPs) from four hospitals and two universities.

Four intensive speech camps and another five quarterly follow up meetings took place. Eight speech assistants were trained to provide weekly speech sessions in rural locations.

In future, TF hopes to expand this Speech Camp into Laos, where there is a lack of services. The camp’s 18 patients will continue to receive follow up care.

Those who attended the camps were very appreciative of the care they provided.

“I am glad to have this project. I would like to thank the staff and teachers. My granddaughter has good speech now. The teachers at school say my niece can speak clearly like other children and gets along well with her friends,” said Mrs. Saengdao Wimonrat from Mae Jan district.

Mobile services, such as these camps, are helpful for patients in regions where limited health care services exist, especially at the border of both Myanmar and Laos.

Our partner hopes to continue this camp system and possibly replicate this system in other underserved regions of Thailand. 


Birth Registry in Thailand Update: Tawanchai Registers 130 patients

July 10th, 2014 by

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TF has partnered with the Tawanchai Cleft Center to develop a birth registry to better track cleft patients and co-ordinate care. Thailand has a high incidence of cleft lip and palate. Yet, no studies or databases on the geographical incidence of cleft lip and palate currently exists.

TF supported Tawanchai Foundation’s initiative to implement cleft lip and palate registration in 75 hospitals. The registry tracked the incidence of cleft lip and palate, so that the government can better understand the need for cleft care services. Medical staff collected statistics for research and provided timely surgery and rehabilitation. 

This project came to a scheduled end in April 2014 and the birth registry will continue with government funding from the National Health Safety Office. Between April 2012 and January 2014, they registered 130 patients.

We hope that, in the future, similar registries can be replicated around the world.


Dr. Mekonen attends training program in Geneva

July 9th, 2014 by

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Dr. Mekonen Eshete Abebe MD, FCS (ECSA) is the Leader of the Cleft Lip and Palate Program at  Yekatit 12 Hospital in Addis Ababa. He is a plastic and reconstructive surgeon and a teacher at Addis Ababa University School of Medicine. 

This week, he is attending  the  2014 Training Program on Surveillance and Prevention of Birth Defects and Preterm Births at WHO headquarters in Geneva. Organized by the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR), the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). 

Birth defects and preterm birth are leading causes of childhood death, chronic illness, and disability in
many countries, including developing countries. 

Dr. Mekonen is currently spearheading a genetic study of non-syndrome clefts in people of African descent.  He is hoping to gain some information about the causes of cleft lip and palate in order to reassure new and expecting parents. He also hopes to implement a birth registry in future. The study should be completed by 2015.

TF is funding some of his training and attendance costs.