Peshawar, Pakistan—When Muhammad Abdullah was born a little over a year ago his parents’ joy over the birth of their first child was quickly replaced by fear and worry. The newborn baby had arrived with a cleft lip and palate.
“When I was in my first pregnancy I had so many beautiful thoughts about my baby, but when I saw my little baby after birth I was really shocked because this was the first case of cleft in the family,” said Abdullah’s mother. “The second difficult thing that I faced were people’s expressions and their questions about Abdullah, like what happened to him and how it happened.”
In the region of Pakistan surrounding Peshawar, where Abdullah was born, exists many myths about children born with clefts. Many believe that if a pregnant woman works during a moon or sun eclipse that her unborn child will develop a cleft, especially if she is using a knife at the time of the eclipse. As Abdullah was the only one in his family with cleft there was little awareness about the condition to know otherwise.
As with many cleft lip and palate patients Abdullah had some initial difficulty feeding. When the family approached a doctor to help with their child’s malnourishment they were told that their son’s cleft could be repaired and were connected to a plastic surgeon. With the first hurdle of their son’s feeding cleared the new parents were ready to get the surgery required to close the gap in Abdullah’s lip and mouth. As quickly as they overcome one difficulty, they were met with another—the cost of the surgery.The young parents were stuck. Should they get the treatment their son needs, but incure an unpayable debt that would put the family in a financial crisis?
The surgeon shared the name of organization who might be able to help—Smile Train. The couple took to Facebook and were able to connect to the organization, and ultimately to the Smile Train partner hospital who would repair their son’s cleft at no cost to them.
While very nervous on the date of their son’s surgery, the couple was relieved after its completion that they and their son would no longer be the center of attention due to his birth defect. “The smiling face of my son sweeps all my worries away,” said Abdullah’s mother.
“Thanks to Smile Train and the doctors who made my son smile,” she added. “And his parents too. Now we are all happy.”
Sunyani, Ghana—Dr. Emmanuel Kofi Amponsah a Smile Train partner surgeon at the Nationwide Cleft Foundation in Ghana post the following story to our Smile Train Facebook Page recently his most recent patient, Mariam.
This is a cleft patient I found on my New Year’s trip to Nkoranza North District in Ghana. While in Busunyaa, the capital of Nkoranza North District, I was called by a community health nurse who had heard me speak about cleft on the radio. She had found a child born with a cleft lip. Lo and behold when I went to examine the child I found this nice girl named Mariam. I immediately transported her and her mum to Sunyani Regional Hospital, where I run my Smile Train program. She was admitted on January 6th, operated on January 7th, and discharged home January 8th. She will come for follow up on the 15th of this month.
Peshawar, Pakistan—Fourteen-year-old Naveed Khan just may be the world’s best brother.
One of two siblings born with cleft, it seemed certain that Naveed and his sister would live the rest of their years without receiving the cleft repair surgeries they needed. The children’s parents, family members, and neighbors knew nothing about clefts. To them it was a curse from God. Even if the family had known that a simple surgery could help the brother and sister, there was no money to provide it.
The siblings were never sent to school and had no friends. Naveed’s sister spent her time in the home helping her mother with cleaning, sweeping, and chores in the kitchen, while Naveed went to work in the fields with his father. They secretly prayed for a miracle.
Soon other villagers became aware of the children’s clefts. Word that the son of a farmhand had an unrepaired cleft lip reached the villagers’ landlord. He quickly offered to sponsor Naveed’s cleft surgery.
Naveed was excited to hear that there was a cure for his misery. Although elated by the words of hope from the landlord, Naveed was also anxious. He told the landlord about his sister and asked if she too could receive surgery. With a heavy heart, the landlord sadly told Naveed and his father that he could not afford to pay for both surgeries.
Naveed decided to sacrifice for his opportunity so that his sister could receive the life-changing surgery first. Naveed told his father that the surgery would more positively impact her life—she could leave the house and eventually get married. Naveed’s sister had the surgery done while his cleft was left unrepaired. Although he was very happy for his sister, Naveed now knew that a smiling life was just one surgery away, but he could not have it.
Last month the family found Smile Train and its free cleft surgery program at Al-Shifa Health Care Center. They wasted no time and rushed to the clinic. Naveed got his free Smile Train surgery done last week and his joy after surgery could not be expressed in words. He is now a happy boy wearing a big smile rather than the scarf he used to cover his face.
In the words of his father, “Naveed got the payback and reward for the sacrifice he made for his sister.”
Beijing, China—Xinrui is a two-year-old girl from Bei Gao Li Village, a rural part of China’s Hebei province. When you see her bright smile today you would never know that she was born with both a cleft lip and palate.
Thanks to the generous support of Smile Train donors and the doctors of Beijing Stomatological Hospital, Xinrui received her free Smile Train cleft lip surgery when she was just three months old and her palate surgery shortly after at 16 months. Because she received cleft surgery so early in life she will never know the teasing or difficulties eating and speaking that so many other children born with clefts face.
Today Xinrui is a cheerful and smart little girl. Although she’s only two years old, she has already become a small leader amongst her friends. Her cleverness has made her a favorite among the adults in her community as well. When little Xinrui visits their houses to play they call it “the happy hour.”
Xinrui lives a happy life with love and care from all of her family and friends.
Manila, Philippines—This weekend many parts of the Philippines were devastated by Super Typhoon Haiyan, one of the strongest storms in recorded history. Smile Train’s Philippines Country Manager, Kimmy Coseteng-Flaviano shared this note with us. Our thoughts and prayers are with the people of the Philippines, including our 60 partner hospitals and 26,000 patients.
As if the 24 storms we experienced this year (plus a major earthquake and war) were not enough…
This week,Typhoon Haiyan (locally called Yolanda – our storms are named alphabetically – so we’re now at letter “Y.”) battered nearly half of the country. The “good” thing is that it moved so fast (235 kilometers per hour) that there was not much flooding. But the winds caused much trouble in the provinces it hit. Data gathering is still being done, but, for now, one of the first hit was a place called Tacloban, Leyte.
Tacloban is where Smile Train established a cleft center, through our partner Maharlika Charity Foundation and with generous funding from Dubai Duty Free. There is no internet, electricity, phones, and water in the entire province of Leyte right now, so news is trickling in very slowly. Windows in offices, hospitals and homes shattered due to the strength of the wind. Cars and roofs were literally flying in the air.
Aside from Tacloban, Surigao was also badly hit. We also just established a cleft center in Surigao through Maharlika and Dubai Duty Free. Other locations affected where we have active partners are Cebu, Bohol, Iloilo (these three are still picking up pieces from the 7.2 earthquake that hit a few weeks ago), and Bicol. It is estimated that about one million families are affected.
I have gotten in touch with some of our partners in areas where their mobile phones are now working. Most of them are generally okay, but are very worried about the patients.
Thank you again for checking in on us here in the Philippines – we’re now known all over the world as the place where the strongest typhoon/hurricane/cyclone on the planet in recorded history made landfall (a total of 6 times!). Vietnam is now bracing herself for Typhoon Haiyan, but luckily, it has weakened since it left the Philippines.
To our friends in Vietnam, I hope you and your loved ones will be spared from the typhoon! Please take care and stay safe!
Multan, Pakistan—Mohammad Akhtar is a 15-year-old boy who grew up with both a cleft lip and palate. His family lives in a remote area of Pakistan known as Jungle Maryala. This area so isolated that in order to get to the nearest city, Multan, 22 kilometers away, one must either travel by foot or animal-pulled carts—there are no proper roads available to get there.
Both Aktar’s mother and father are illiterate and had very little awareness about the treatment of cleft lip and palate. Furthermore, as a carpenter, Akhtar’s father was barely able to provide for his wife and eight children, with Akhtar being the only born with a cleft. Due to the family’s poverty, his parents were helpless to address their son’s cleft lip and palate. Akhtar’s mother said that she and her husband worried about Akhtar so much that “they gave him more attention than the other siblings because all others were leading a normal and healthy life.”
One day, a neighbor of Akhtar’s, who often visited Multan, read a billboard advertising Bakhtawar Amin Memorial Trust Hospital’s Smile Train program, providing free cleft lip and palate surgery to patients in need. The hospital was also located in Multan. When he returned home, the neighbor immediately told Akhtar’s father about the treatment. While he was overjoyed to hear about the free treatment as he could not bear the expense of surgery himself, unfortunately Akhtar’s father could also not afford the expense of travel to the hospital. His neighbor then offered provide the father with the carriage he usually used to visit the city.
Akhtar, along with his parents, arrived at the hospital on June 10, 2013 and were welcomed warmly by the staff of the hospital. After the initial checkup, Akhtar was scheduled for surgery two days later. After a successful cleft lip and palate surgery by Dr. Amir Hanif, Akhtar and was discharged on June 15th and returned home.
The team at Bakhtawar Amin visited Akhtar and his family at his home in Jungle Maryala to see Akhtar’s progress since the surgery. His father commented, “Akhtar, having cleft lip and palate problems, was living a very difficult life with an inferiority complex because not only his peer group, but also his siblings, made fun of him.”
The parents were very happy and were thankful to Smile Train as well as Bakhtawar Amin for helping their son when they could not.
Salvador, Brazil—Smile Train staff member Caity Roarke recently visited Hospital Santo Antonio a Smile Train partner hospital in Salvador, Brazil. While there Caity was able to meet Bianca and observed the quality cleft care provided to this young patient. She shares her experience below.
Bianca Lima received her first surgery to repair her cleft lip at Hospital Santo Antonio in Salvador, Brazil, on July 10, 2013. When I met her last month, she had just turned four and was back at the hospital for a series of aftercare visits. In one day and in one building, she was cared for by a social worker, a speech therapist, an orthodontist, her surgeon and a psychologist.
Every day Hospital Santo Antonio sees patients for everything from pre-screening for surgery, to speech therapy and orthodontics. The facilities at the hospital allow for continuous and accessible after care for past patients as well as those who received surgery at another hospital. Their main waiting area is a circular ‘one-stop-shop’ where patients can see as many as eight different practitioners all in one day. This is especially important to those patients, like Bianca, who have to travel miles and miles in order to see these doctors and get the appropriate care after their cleft surgery.
The last time Bianca was at the hospital she had come for her Smile Train surgery. Before the surgery she never spoke. On the day I met her, she met with a speech therapist to come up with a plan to expand her language. Bianca then met with a psychologist to help her become more comfortable engaging with others.
While she is still a bit shy about speaking, she instantly lit up around the other children in the waiting room and spent the entire afternoon playing games and interacting with everyone around her, laughing and smiling the whole time.Bianca is just one of the many examples of how essential aftercare can be and what a profound effect it can have on children’s lives beyond one surgery.