Smile Train Stories

Nairobi, Kenya — When Dr. Sylvia Noah met Elphas Sifuna, she met a boy who hid behind an over-sized hat and a large, brown trench coat with a popped collar to cover his mouth. As Dr. Noah spoke to his guardian, Elphas quietly stared at the floor trying not to be noticed. He refused to take off his hat.

As the screening progressed, Elphas whispered a question: he wanted to know if his cleft lip would be repaired and if he would be allowed to start school. Dr. Noah soon learned that Elphas “was a loner and did not have any friends. He had not started school because of his cleft lip. He was a shy boy who would not look you in the eye or talk comfortably unless he had his hat on.”

Luckily, a social worker found him and 11 other children with cleft and arranged for them to be screened for cleft surgery at Smile Train partner hospital Gertrude’s Children’s Hospital. The morning after his screening, Elphas received free cleft lip surgery and awoke from anesthesia a new child.

When he looked at himself in the mirror he was so pleased he could not help smiling. He came to the clinic before travelling home, without his hat or coat on and told me he was going to school. He had a sparkle in his eye, a bounce in his step and courage to face the world.”
—Dr. Sylvia Noah

Thanks to a network of compassionate people, most of whom he will never know, Elphas has been given a new chance at a normal life. By all accounts, he is determined to make the most of this gift.

Brazzaville, Republic of the Congo — Smile Train’s goal is to make sure that every child born with a cleft in the world has the opportunity to live a full and productive life, and the only way to accomplish this is through teamwork. Smile Train supporters provide us with the funds which we distribute to our network of partner hospitals, surgeons and hospital staff who work together in and out of the OR to give children new lives. Nowhere is this more evident than in our first operations in the Republic of the Congo.

Earlier this month, three of our best partners in Africa, Jooko Cleft Association (Senegal), AMREF (East Africa), and Sourire a la Vie (Cote d’Ivoire), visited the Republic of the Congo to provide free cleft lip and palate surgery and provide advanced training to a local surgeon and medical team. This mission was organized by Ms. Julienne Johnson of the Congolese organization FELBO. At Albert Leyono Clinic in Brazzaville, the team performed 50 life changing free cleft surgeries in 5 days and worked with the Clinic’s staff to start the training process to become a full time Smile Train partner.

In honor of their exceptional teamwork and the hope that Albert Leyono Clinic will one day become an official partner, we put together this poster featuring their patient, one-year-old Mesange Nsona. Visit Smile Train’s Facebook page to set the full sized version as your Facebook timeline cover and show you’re a part of the Smile Train team.

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

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

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.

Kigali, Rwanda — Smile Train’s STOP Clefts initiative recently concluded it’s first phase of activities in Rwanda. STOP Clefts is a program to jump start potential new local partner hospitals in countries and regions that do not have a local team already using established Smile Train partners in bordering countries/regions.

The team provided 146 free cleft surgeries.

In conjunction with the University Teaching Hospital and the Ministry of Health’s public health specialist Dr. Bonaventure Nzeyima, one of Smile Train’s partners in Kenya, Help a Child Face Tomorrow provided training to local doctors and 146 free cleft surgeries.

Deeply religious, when Euginie and her husband’s baby girl was born with a cleft lip, they named her Patience — believing that patience in their faith would make her whole. Their strength and fortitude was rewarded as 6-month-old Patience received free cleft lip surgery at University Teaching Hospital.

While Patience was spared a life of ridicule and torment, Sitefano Niyibizi endured for 60 years before he could get his cleft lip repaired. He lost hope long ago since he never had the money to travel to the city and see a doctor. When he learned about the university’s bus collecting patients in his village, Sitefano dropped everything and hopped on board.. After his cleft surgery, he told the team “If I die today, I will die happy. Thank you for this gift.”

Check out more pictures at our STOP Clefts Rwanda facebook gallery.

Nairobi, Kenya — While many people celebrate the New Year by popping a bottle of Champagne and watching the ball drop in Times Square, our patients such as Abdi Hasan are celebrating in a different way — smiling. Smile Train Program Manager of East Africa, Dr. Esther Njoroge, sent us an email wishing everyone a Happy New Year and sharing a wonderful story of the man with cleft whom she met on Christmas Eve:

Happy New year to you all! As we start 2012, I have a story to share.

The day before Christmas I was walking in Nairobi town and I bumped into a young man while crossing the road. The first thing I noticed was his cleft lip and I grabbed his arm and pulled him aside. I was more surprised than he was because in all my years at Smile Train, I had never seen a cleft patient walking around town. I introduced myself and asked him if he had ever heard of cleft repair. He told me he was from North Eastern Kenya and had come to Nairobi hoping to get his cleft repaired but so far had not been successful in finding a doctor since he had no money. I told him Smile Train can help him get his cleft repaired, and more so at no cost to him. He did not believe me. Fortunately I had a brochure with me so I gave it to him with my phone number and asked him to tell his relatives to call me. Sure enough that eveing the cousin called. To cut the long story short, we organized for him to be picked up and taken to Metropolitan Hospital on 31st Dec. When they got to Metropolitan and were given the ST consent form to sign, they read it word for word and they only had one question, what is the catch? Will we be told to pay once he comes from theatre or you want to take his kidneys?…the cousin called me and asked if it was a hoax. I reassured him…

The surgery was done the same day and Abdi Hassan received a New Year gift, courtesy of a stranger to him! He is doing well. He is very grateful and says he will take the message back to Wajir where he comes from and knows of many patients suffering from the same.

And that, is my New Year motivation to do more for cleft patients.”

— Dr. Esther Njoroge.

In a few more days, the swelling will go down, and Abdi will be able to start a new chapter in his life thanks to Esther, our donors, and Dr. Wanjeri and the Metro Hospital team. To all of our patients who are starting their lives anew, our amazing supporters and partners that make Smile Train run, Happy New Year!

Abuja, Nigeria — Two weeks ago, four-year-old Obumneme Nwakpoke was our Smile of the Week. Our local Smile Train partner Ebonyi State University Teaching Hospital saw Obumneme’s “SOTW” pictures and recently reached out to us with a short update.

Obumneme was discharged a few days after his surgery and was brought home by his parents, Christopher and Grace. Obumneme is the second oldest of four, and his two brothers and sister were excited when he returned home, and even more so when they saw his new smile.

He has returned to his nursery school and his classmates no longer tease him about his lip. He’s making a lot of friends with his bright smile and happy, outgoing personality. While his parents were a little hesitant about what they let him eat when he first returned home, since he has healed, he has started eating his favorite food again: yams.

His parents wanted to thank the doctors, staff, donors, and everyone else who helped give Obumneme a new smile. On their behalf, and on behalf of all of our patients and their families, thank you to our wonderful partner doctors, hospital staff, and donors for giving so many children like Obumneme a second chance at life.

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.

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.

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.

Niamey, Niger — A country that is nearly double the size of Texas, the landlocked Republic of Niger is over 80% desert. Niger has routinely placed amongst the lowest on the United Nations Human Development Index, a measure of life expectancy, literacy, education, and standards of living. Under these conditions, children born with cleft could never hope for their families to afford the surgery that could repair their clefts and give them the chance at a normal life. Fortunately, this past year, Niger officially became one of the countries in which Smile Train operates in. Among those helped by Smile Train in Niger is Ridouane Moussa, a one-year-old who will luckily never know the pain and isolation that can come with an unrepaired cleft.

Ridouane’s parents eagerly awaited the birth of their son, and were shocked when he was born with a bilateral cleft lip and palate. While they could not figure out what they had done to cause it, they knew that trying to assign blame to each other or their actions would accomplish nothing. The only thing that mattered was finding help for Ridouane.

For the first 12 months of Ridouane’s life, his father traveled from hospital to hospital searching to see if anything could be done for his son. While the hospitals told him that his son’s cleft could be fixed by surgery, his hope was always crushed when they told him how much the surgery would cost. In the meantime, Ridouane was having trouble feeding. Then one day, his father received good news from a source he never would have expected: a mechanic that had come through his village told him about an advertisement he saw for Smile Train partner CURE Hospital Niger.

It didn’t take long for Ridouane to show up in his father’s arms. Ridouane received free cleft lip surgery and will have his cleft palate repaired in the coming months. His father was ecstatic over his treatment and proudly brought Ridouane home to show off the first stage of his transformation. Shortly thereafter, he came back to the hospital — only this time, it was with another child from his village that had an unrepaired cleft. The child was enrolled for surgery and returned to the village with a bright new smile too.

Kano, Nigeria – Within moments of giving birth, Mariya Habibu went from the extreme joy of seeing her daughter Fadima for the first time to absolute heartbreak. Fadima was born with a unilateral cleft lip. Having grown up seeing others with unrepaired clefts, Mariya knew just how tough her new daughter’s life would be. She was devastated to think of how the stigma associated with cleft would impact her daughter for the rest of her life.

Before this forlorn sense of doom settled into her heart, Mariya was given a lifeline by the midwife that delivered Fadima into the world. She told Mariya that if she traveled from her village to the city, Fadima could receive free cleft surgery to repair her disfigurement. The midwife even told her where to go: Smile Train partner Grass-root Smile Initiative at the Armed Forces Specialist Hospital, Kano.

Not wasting any time, Mariya borrowed money from her friends and neighbors to travel to Kano and on the third day of her life, Fadima was in front of Smile Train partner surgeons. Standard medical practice dictates that a cleft lip surgery should be performed at age 3 months, not 3 days. The hospital staff explained to Mariya that she would need to wait for her daughter to grow strong enough for the surgery. After educating her how to properly feed Fadima and on vaccinations her baby would need, the staff sent her home with a follow up date.

Sure enough, Mariya arrived early to make sure that the doctors hadn’t forgotten about little Fadima. Fadima received free cleft surgery later that day. When Mariya and Fadima were discharged, Mariya gave her undying thanks to the Smile Train doctors, medical staff, and “all of the nice people who she would never meet” that paid for her daughter’s surgery. She promised to continue to tell everyone she came across that clefts are not a curse and that they can be repaired for free, just as her midwife had done months before.

Nairobi, Kenya – In late July,  Peter Kimani was pushing his bicycle full of goods down the road when a stranger approached him to say hello. On August 3, he stepped out of Metropolitan Hospital, the warm sun beaming down upon his brand new smile.

Dr. Githinji Gitahi, Smile Train’s Regional Director of Africa, was driving through Kibati in Kenya’s Murang’a County when he saw a man with a bike coming in the opposite direction. While certainly not the first time a bicyclist passed a car, something caught Dr. Gitahi’s eye in the fleeting instant that made him pullover— the man had a cleft. Dr. Gitahi stepped out of his car and chased after the man. When he caught up, the stranger turned around. To Dr. Gitahi’s confusion, the man was biting his upper lip. Was the man consciously hiding his cleft lip?  Had he made a mistake in that split second? Did the man even have a cleft lip? Would it be less awkward if he just returned to his car? Realizing that there would be no harm in asking, Dr. Gitahi said hello. The 37-year-old-man smiled back and introduced himself as Peter, revealing his unrepaired unilateral cleft lip.

Dr. Gitahi explained to him that he worked for Smile Train and asked Peter if he knew that he could receive free surgery to repair. To his shock, Peter responded that he had heard there was free surgery, but never followed up believing that there would be some sort of a catch for “free treatment.” Dr. Gitahi assured Peter that the surgery was legitimately free thanks to donors in other countries and they exchanged information. Before he was even back to his car, Dr. Gitahi was on the phone with his team to arrange a screening for Peter at Metropolitan Hospital. After being picked up and driven to the hospital by Dr. Gitahi and his team, Peter received his surgery on August 2nd.  His excitement at having his cleft repaired after 37 long years rang through the hospital and as he looked in the mirror that his surgeon, Dr. Kimani Wanjeri, provided for the first time, he happily proclaimed that

I might have to miss a few days of work, but it is SO SO WORTH IT!!!”

Peter is scheduled to return to the hospital for a follow up on August 11th and is looking forward to showing off his new smile to everyone, promising to spread the word that Smile Train does provide free cleft surgeries.

The words that keep ringing in my mind are, ‘I dont believe it’s for free and yet I could never afford it!’ It just shows how many people we still need to reach out there and who are still suffering. Luckily, people like Peter become real ambassadors for Smile Train.”
Dr. Githinji Gitahi