School For Tuhaise

Tuhaise 1Tuhaise was born in a remote village in Kibale, Uganda. As soon as his mother and father saw his cleft lip, they left the village and abandoned him. When his Aunt Maimuna heard this horrible news, she went to see her nephew. “I immediately connected to Tuhaise and decided to take him in; I had little money and many children to take care of, but Tuhaise needed a mother,” she recalled.

Tuhaise 2

Maimuna is a subsistence farmer on a small piece of land. She knew that cleft surgery was available at the regional hospital, but thought she would never be able to afford it. Years went by and the young boy remained at home while his cousins attended school. Maimuna said, “It was heartbreaking to see little Tuhaise suffering from rejection in the village, my children would ask me to take him to the tailor shop to have his lip ‘sewed’ so that he could look normal.”

Fortunately, Smile Train partner CoRSU hospital was running a community mobilization campaign near their village to sensitize people about accepting disabilities. Maimuna met with the hospital staff; she knew it could be her only chance to have Tuhaise medically attended to. With a few clothes in her bag, she left home and headed to CoRSU.

tuhaise 4With funding from Smile Train, Tuhaise received his new smile and Maimuna could not stop singing words of praise to the people who made her nephew’s new smile possible. She recently reported that, “Tuhaise is no longer an object of ridicule in the village, he will go to school with my other children very soon.”

 

Increasing Patient Safety in Africa: Training Nurses in Post-Operative Care

Nurses at Smile Train partner Gertrude's Children's hospital in Kenya utilizing their new training

Nurses at Smile Train partner Gertude’s Children’s Hospital in Kenya, implement the skills they learned in the post-operative care training course

Kampala, Uganda — At Smile Train, patient safety is our number one priority. With this in mind, Dr. Sarah Hodges, an anesthesiologist, and Rona Breese, a registered nurse, sought to improve the care Smile Train patients receive in the recovery ward, which is as important as the care a patient receives on the operating table. Both women are UK-transplants who now live and work full time in Uganda and worked at Smile Train partner hospital CoRSU for many years. Together, they developed a training program to improve the safety and effectiveness of post-operative nursing care for children.

This innovative, three-day training course combines lectures, demonstrations, group discussions, and scenario-based activities. Among the topics included in the training are post-operative care following cleft surgery, post-operative complications, monitoring vital signs, and pediatric basic life support.

Since its launch in November 2011, the course has been delivered to eight groups of participants in six countries throughout Africa. The participants are comprised of one to two nurses from each Smile Train hospital in the country where the training is held. Upon completion, the nurses return to their hospitals and teach the material to their colleagues. Over 165 nurses have completed the program, all of whom are female.

Throughout the course we as trainers emphasize the importance of the role of the nurse and the value that we and Smile Train places upon nurses. We recognize the difficulties that they face in the workplace and poor recognition of the nursing profession. We aim to teach them in a way that recognizes their knowledge and experiences and we try to instill self-belief and purpose in what they do. Nurses need to believe that they can make a difference by what they do and we repeatedly emphasize this. This philosophy underpins the training and we feel that this is an important element of the training that should be retained.

“We are confident that those nurses who complete the training will leave with increased understanding and competence in cleft care, we hope they will share this with their colleagues.”

In just three days, nurses who complete the course show an average improvement of 54% between pre- and post-course evaluations.

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.

When I Grow Up…

Kampala, Ugandatoday’s blog comes from Smile Train Marketing Associate Adina Wexelberg-Clouser, who is currently in Uganda as part of her Master’s degree and has been working with our partners in the field and visiting former patients.

Smile Train patient Olivia two years after her free cleft lip surgery

“I want to be a doctor!”

Before she received Smile Train sponsored cleft surgery at 10 years old, this is a dream that would never have been feasible for Olivia Nabusiita.

Born in a remote village hours outside of Kampala, Olivia’s mother had taken her newborn to a local healer to see if he could fix her daughter’s disfigured mouth. The healer, who had no surgical experience, had cut open her lips and attempted to stitch them back together. Soon after, the stitches burst open and Olivia spent her childhood being mocked and bullied by other children in her village.

Smile Train patient Olivia before free cleft lip surgery

When Olivia was six years old, her mother was no longer able to care for her and Olivia was sent to another village to live with her mother’s friend and her family. Because of the way she was treated by others in her village, she refused to attend school and seemed destined to spend her life as a social outcast. Years later, a neighbor heard a radio announcement about Smile Train’s free cleft surgery program at nearby Kibuli Muslim Hospital and told Regina that Olivia could be helped.

Although she was scared, Regina immediately took Olivia for treatment. Since her surgery two years ago, Olivia has returned to school and is determined to study hard in order to achieve her dream of giving others the same help that she has received. When asked what has changed in her life after receiving the surgery, a shy smile spreads across her face. “Now, I feel beautiful”, she responds.

Sister Dr. Najjuka Liliana Lucy Gerardine and Dr. Jyotsna Murthy

New York, NY — In honor of International Women’s Day, we decided to focus the spotlight on two of our leading women in the field, surgeons Sister Dr. Najjuka Liliana Lucy Gerardine and Dr. Jyotsna Murthy. These two remarkable surgeons have dedicated their lives to giving others a second chance at life and are a constant inspiration to our Smile Train community.

Sister Dr. Najjuka Liliana Lucy Gerardine

Smile Train partner Sister Dr. Najjuka Liliana Lucy Gerardine and cleft patient

A Smile Train partner since 2008, Sister Dr. Najjuka, based at Surgical Centre Smile Train Mbarara in Uganda, is a leading force in delivering cleft care throughout Africa. Sister Dr. Najjuka has provided over 650 Smile Train sponsored cleft surgeries on a continent where surgery is a male dominated field.

She is both student and teacher; never passing up an opportunity to improve her surgical skills and organizing cleft missions focused on teaching more local doctors, both men and women, throughout Uganda, Tanzania, Burundi and all of East Africa. She is currently in Burundi teaching a perspective local surgeon the proper techniques to one day become a Smile Train partner.

Dr. Jyotsna Murthy

Smile Train partner Dr. Jyotsna Murthy with cleft patient

More than a decade after her first Smile Train surgery in 2001, Dr. Jyotsna Murthy MS, M Ch, DNB has provided over 5,000 free cleft lip and palate surgeries. Not to mention all of the surgeons that she has trained and instructed as a professor at Sri Ramachandra University and on countless medical/training missions, including Sister Dr. Najjuka.

Her generosity and compassion know no bounds as she has spearheaded numerous initiatives in India for surgical care and has been integral in Smile Train’s development of new local partners. She is dedicated to not only repairing clefts, but understanding them as well and is involved in many research projects on the psychosocial problems that can develop from unrepaired clefts and the genetic study of how clefts form.

A Curse Broken, A Life Begun

Kampala, Uganda — In Uganda, when a child is born with a cleft lip or palate, tradition dictates that he or she is named Ajok or a variant of it. It literally means “Cursed by God.” Unfortunately, in far too many cases, this “curse” becomes self-fulfilling as the child is shunned and ostracized, destined to lead a life of unwarranted shame and isolation. Before he came to Smile Train partner Uganda Burns and Plastic Surgery Institute Hospital: Mulago National Referral Hospital, six month old Ojok Ismail was destined to this same fate.

Smile Train Ojok Ismail before free cleft surgery

Ojok’s mother was a laborer on a farm where she met her husband. They arranged to get married and according to custom, her husband paid the first part of his dowry to her shortly before the birth of their son. When Ojok was born with a bilateral cleft lip and palate, his father soon ran out on his family believing that his son was cursed and that it was his wife’s fault. Ojok’s mother was left without a husband, support, or the remainder of the dowry to take care of her infant son and so she moved to a larger town to find work.

Unable to afford someone to watch over Ojok while she worked, she brought him to her job at a local bar everyday. This turned out to be a blessing in disguise, as a month after she started working at the bar, a customer noticed the small baby with a cleft in a makeshift crib in the corner. The customer was a relative of another Smile Train patient who had his surgery fixed the year before. He explained that her son was not cursed, but rather was born with a birth defect called a cleft — and that it could be fixed. He persuaded Ojok’s mother to come with him to see the health worker who had helped his family before and within days, Ojok was admitted for free cleft surgery.

Smile Train Patient Ojok Ismail after free cleft lip surgery

When Ojok was discharged from the hospital with his newly repaired cleft lip, his mother shed tears of joy knowing that he would never have to go through the trials and hardships that she had faced due to his cleft. Ojok left the hospital with a bright new smile and a scheduled date to repair his cleft palate when he gains more strength. His mother left the hospital with a happiness she had not felt in months and the hope that her estranged husband and her village would welcome Ojok back.

Thanks to the wonderful support of our donors, a benevolent stranger, and the hard work of our partner surgeon Dr. Robert Ssentongo, Ojok’s “curse” has been lifted before he was old enough to experience the hardship. Ojok’s mother and family will always remember the moment he was given a new life and will help Smile Train abolish the superstitions associated with clefts.

The Dangers of Misinformation

Supporting awareness is a big part of Smile Train’s work. We strive to get the Smile Train name out to as many communities as we can, and we work to ease the fears of concerned parents, many of whom have never been told that their child’s cleft is completely treatable. Sometimes, however, misconceptions about cleft conditions can be deadly: Kiiza is a young boy from a community that believes that children with clefts are cursed and responsible for the misfortunes of the whole group. Sadly, this is not the first we’ve heard of practices like this. Kiiza’s story underscores the importance of Smile Train’s mission to provide information as well as treatment. Our partner Sister Doctor Najjuka, from Uganda wrote to us about this young man…

Kiiza was brought to us at the age of 13.

He was born to a cattle keeping community which believes that a child born with a craniofacial deformity brings a curse to the herd which results in loss of cattle.

Others like him are traditionally buried alive in a heap of cow dung, at birth and never see the light of day.

Luckily he was delivered in hospital, and by the time his clans mate took a decision about his fate the health care providers had already assured the mother that the child will grow up like any other if he receives care.

Care however didn’t come early since this community lives in the country side. An attempt to send him to school failed because he easily became a laughing stock in class being mocked and ridiculed.

The Mother didn’t lose hope about her son. When an announcement was made inviting all children with this deformity to come in for free surgery Sponsored by Smile Train, with a promise to assist with transport she borrowed money from her neighbors and brought him for surgery.

He was all praises to the Smile Train, and promised that though he is starting his studies late in life, he will work hard and become a doctor to help other children with similar problems, Thanks to the Smile Train.

Myths about clefts are still a major problem in developing countries, and one of the many challenges Smile Train faces. If Kiiza pursues his dream, he will be able to use his first-hand knowledge of the dangers of misinformation to help future generations of cleft children in Uganda.