The Need for a Permanent Presence

Smile Train patient HAnef Abdul Samad before free cleft lip surgeryMarikina City, Philippines — When Hanef Abdul Samad was born with a cleft lip or “bingot,” his mother saved as much money as she could to travel nearly 500 miles from the conflict-affected island of Mindanao to Manila to find help. She left her home, her family, and everything she had ever known for the slim chance that her son’s cleft lip could somehow be fixed. Shortly after they arrived in Manila, Hanef was lucky to be screened and scheduled for free cleft surgery by a medical mission group from the USA. All of her hopes had come true. Until the medical mission group suffered from internal problems and Hanef’s surgery was among those cancelled.

Hanef and many more who had been scheduled for surgery would not receive it as the mission group had to leave shortly after they corrected the problems that stalled their good work. Angry at the twists of fate that continually kept her son from a normal life, dejected and forlorn, Hanef’s mother continued on her quest to help her son with an even heavier heart. Unable to find work and watch her son, she reached out to a local charitable organization to help her get on her feet. The organization quickly referred her to a relatively new Smile Train partner, Marikina St. Vincent Hospital. Fearing further disappointment, she was very hesitant to bring Hanef in, but realized that for Hanef, she could never abandon hope.

Smile Train patient HAnef Abdul Samad after free cleft lip surgery

Within days, Hanef received free cleft surgery under skilled surgeon Dr. Edmundo Mercado and a second chance at life. His mother was relieved of her fears and disappointment and with the help of a Smile Train Smile Grant and the local charity, they were able to begin the long journey home: promising to spread the word about Smile Train.

Marikina St. Vincent Hospital Smile Train cleft patients and staff

Having a permanent, local presence where partner hospitals can provide surgery year-round holds Smile Train to our promise to never turn a child away and ensures that temporary setbacks and timetables will not result in cancelled surgeries and lost hope.

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.

Taina Reborn

Salvador, Brazil — Two years ago, eight-year-old Taina Dos Santos was a shy girl. Hiding her mouth from strangers and even her family. She would go to school, but was constantly made fun of and teased. When her siblings started to be made fun of for Taina’s cleft lip and palate by their classmates too, it only made it harder for Taina and her family.

Smile Train patient Taina Dos Santos before cleft lip surgeryTaina was born with a severe cleft lip and palate. She had trouble eating and speaking properly. She relied upon her family for compassion and support when she was tormented by the outside world. Before her mother brought her to Smile Train Partner, Fundacion Pequeno Principe, she avoided catching her reflection in a mirror at all costs: ashamed at her birth defect that separated her from her schoolmates.

Smile Train patient Taina after free cleft lip surgery

Tania immediately after her cleft lip surgery

All of that changed on a fateful April day in 2009, when Dr. Geza Laszlo Urmenyi repaired her cleft lip free of charge thanks to Smile Train donors, as her mother Cirlene explained.

The surgeries were a victory for me. My dream since Taina was born has been these surgeries. My daughter and I faced many difficulties to finally find cleft services. All of my children were disturbed at school. After Taina’s first surgery, it didn’t happen anymore and they could study in peace.”

Smile Train patient Tania Dos Santos two years after free cleft lip surgery

Tania just prior to her cleft palate operation, two years after her cleft lip surgery

Cirlene, was unable to bring Taina back to repair her cleft palate until recently, but Taina’s surgery and progress has been followed closely by family and friends who have seen a metamorphosis in their little girl that they never thought was possible.

“Before Taina didn’t look herself in the mirror. Today she is different, she is proud and likes to use lipstick like her classmates. All of my friends and neighbors in the countryside followed Taina’s treatment and got very happy with the result. I cried a lot when I saw my daughter’s operation, but this time, they were tears of joy.”

On behalf of Taina and her family, thank you Dr. Urmenyi, your staff, and everyone who has made Taina’s transformation possible.

Peking to Paris for Smile Train

Peking, ChinaKip and Carmen Waistell aren’t your average couple. The Smile Train donors from Hereford, UK recently returned home from an amazing journey driving in classic Austen cars from Peking to Paris and raising money for Smile Train. They drove the cars, nicknamed Mrytle and Kotka, on a 7,000 mile trek and stopped at a number of Smile Train partners along the way to see how the money they raised was being used to give children new lives and smiles. We’re happy to post excerpts from Kip’s chronicle of this spectacular adventure. The first is from the start of their journey in Peking on Wednesday, May 25th.

Smile Train donors Kip and Carmen Waistell before their journey

I worked on the cars all morning discovering that some of the grease nipples were blocked, or the grease gun would not fit. Broke the new grease gun. Got cross and tried to make myself feel better by swearing a bit. Took ages trying to get grease to go where it should, (got it easily pretty well everywhere else!) checking oil levels, checking plugs, making sure all bolts/nuts tight.

After lunch, which left me feeling a bit “iffy”, we were off to the Peking Children’s Clinic, founded by the Rockefeller Foundation in 1921, to which we were driven by the local Smile Train representative, Elvis Chen, a charming fellow who had been with Smile Train only three months. We met Dr Zhou, the surgeon, who then introduced us to some of the kids and their parents.

We learned that there are cleft lips, cleft palates and cleft gums. Some kids suffer from the lot. Others have just one or two of the problems. We were told that cleft lips are done first, then the palate. These operations were carried out, preferably, at just a few months old, and the earlier it was done the better, though we were to learn in Mongolia that because of the distances involved to get kids to hospital, and the difficulties in promoting the programme, some children were being treated for the first time as late teenagers.

The hospital, of which the clinic formed part, was enormous. 1,800 beds and 4,000 staff. All the nurses wore head coverings, shoe coverings and overalls. The doctors all wore white clothes. No clutter anywhere, and very clean- this was what we found at all the clinics we visited.

Kip and Carmen Waistell visiting a Smile Train partner hospital

The first patient we saw was a one year old boy who had had his cleft lip repaired, and was now returning to have the cleft palate seen to. He was accompanied by his parents, brother and granny. Elvis had given us gifts from Smile Train to give to them. Then we saw a 19 year old girl who was in for further work on a cleft palate, done some years previously. Finally we saw a four month old girl, Li Siyu, adorable, in for both cleft lip and palate work. It was all very moving, and some of the parents were in tears. Dr Zhou told us that his clinic had now done sixty-six operations with Smile Train, (in about a year since their relationship began), to whom a full dossier would be sent on each patient, with before and after photographs.”