Coping With My Daughter’s Cleft

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Dehradun, India – Manoj Sagar, whose daughter, Tezi, was born with cleft lip and palate, shares his story of how he initially reacted to his daughter’s cleft, and how Smile Train was able to help him find hope in a seemingly hopeless situation.

My wife did not see the child, Tezi, immediately after birth as she was exhausted by labor. I was the first person in the family to see that my child was born with a deformity. I was immediately shocked, overwhelmed, and terrified. My hands and feet trembled and my throat became parched. I felt that God had cursed me by giving me such a monstrous child. I did not know what to do.

I was so overcome with sorrow that even when a local doctor informed me about the Himalayan Institute where Smile Train could fix Tezi’s cleft for free I was still in denial that the cleft could be cured. It wasn’t until I saw the transformation with my own eyes through similar patients who underwent surgery at the Himalayan Institute that I had a slight change of heart.

We are lucky because we live only a few minutes from the hospital, so I was able to take Tezi there without any difficulty. After a quick 45-minute surgery that was free of charge I was completely relieved to see my daughter turn from a monstrous child into an angel. Now that the swelling from the surgery has gone down, no one can say that she has ever had a facial deformity. Thanks to Smile Train my darling girl is free to lead a normal life full of self-esteem.

10th Annual Hot Lips Hustle 5K

First runner to finish hot lips hustle 5K.

Marietta, GA—Hundreds of runners and walkers raised over $6,000 for Smile Train at the 10th Annual Hot Lips Hustle 5K on Saturday, September 20. The Hustle was founded in 2004 by Ryan Ernstes, a 12-year-old girl who was born with a cleft. Now 22, Ryan is still committed to helping other children who were born with the same birth defect.

Besides raising enough money to fund 24 new smiles, the event was a fun family affair, with even dogs participating. Many people came dressed in silly costumes and wigs and there was a live DJ, lip tattoos, an ice cream bar, and great food. There were trophies for the top finishers (even for the top dog racers), and all entrants were entered into free prize drawings, but Ryan believes that the greatest prize of all was being able to give a child a new smile and a new start at life. Over the past 10 years the Hot Lips Hustle 5K has contributed to 366 surgeries for children all over the world, changing their lives forever.

Runners during the race.

Runners during the race.

A True Journey of Smiles

Bosawas Jungle, Nicaragua—It’s not every day a man is willing to travel almost 175 hours, by air, land, and water, to make sure a patient receives cleft care, but that is exactly what Smile Train friend, Martin, did.

While on a short-term assignment in the Bosawas Jungle in Nicaragua, Martin Rojas met a nine-month-old with a cleft lip and palate, Queben Spelman. Because the little boy was from so deep inside the jungle, there was no knowledge of cleft, let alone treatment. Even if there had been, Queben’s mother, Bertalina, could not afford the surgery. There was no hope for Queben, until Martin came along.

After meeting Queben, Martin vowed to return to collect the infant and his mother so that Queben’s cleft could be repaired and five months later Martin fulfilled his promise.

“Having traveled all over the world and seeing dying children due to malnutrition, especially exacerbated by a cleft lip and palate and the subsistence, survival of the fittest, jungle living in which Queben lived, my biggest concern was that he would not be alive when I returned,” Martin said.

Martin’s journey started in Dallas, Texas. From there he landed in Managua, Nicaragua, drove about 12 hours (400 km) past where the road ended until driving became impossible. Then, Martin made a 23-hour journey via dugout canoe through three different rivers, spanning 200 km, to reach Queben and his mother in the heart of the jungle.

There was little rest upon arrival as Martin wanted to get Queben to the hospital as soon as possible as the little boy was suffering from malnutrition, due to his cleft, and was very ill.

“At 10 pounds and 12 ounces fully clothed and 24.4 inches long at 15 months old and not able to stand on his own. He was in awful shape, but alive!” Martin said.

With Queben and Bertalina this time in tow, Martin made his way out of the jungle and to the nearest Smile Train hospital in Leon, Nicaragua, which was just as grueling a journey.

Once at the hospital Queben was treated for malnutrition. He was there for about a month and half before he was healthy enough for surgery. During this time Bertalina proved herself to be a brave woman having never been out of the jungle or around any electrical appliances, cars, or elevators. The Smile Train team had to show Bertalina what a light switch was used for and how to use a faucet for she had never had electricity or running water.

After proper nourishment, Queben was able to receive his cleft lip and palate surgery. Once Queben recovered from surgery, Martin returned from Texas to bring the family back to their village in the jungle. Although a huge sacrifice, Martin was repaid by the happiness of Bertalina.

“Words can not express the immeasurable joy and peace written on the mother’s face. Her smile could not be contained for the joy in her heart at seeing her sickly son, on the verge of death, being brought back to life and given a second chance,” Martin wrote after returning from Nicaragua.

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The Story of Happiness

Dr. Meschack Ong’uti (left), with Happiness and her mother, Emina after Happiness' Smile Train surgery.

Dr. Meschack Ong’uti (left), with Happiness and her mother, Emina after Happiness’ Smile Train surgery.

Garoua, CameroonPaul Kimani from Smile Train partner Help a Child Face Tomorrow shares his introduction to Happiness—a nine-year-old girl from Cameroon.

As I was walking around the ward filled with pre-op patients with cleft lips, my eyes was drawn to two, a mother, Emina, seated while sleeping, with her daughter lying on her lap, both looking physically exhausted. I later came to know that the girl was the woman’s nine-year-old daughter, Happiness Betah.

When Emina married all she wanted was a family of her own. “I come from a huge family, seven sisters and four brothers,” she said. All of her siblings were married with kids. But her wish did not come as soon as she had expected, as it took her almost five years to conceive. At one point almost being divorced by her husband.

Hapinness Betah, 9yrs (1)

When she became pregnant it was the happiest moment of her life, not only was her wishes of having a child coming true, but her treasured marriage was not going to crumble. Her happiness was short lived though when she gave birth to her daughter, who had cleft lip and cleft palate, a condition which she had never seen before in her life.

Emina’s life went on a downward spiral when rumors started spreading that she cheated on her husband and that is why she gave birth to a child with cleft. Her marriage on the rocks, she felt as if the whole world was against her.

“We don’t always get what we want in life,” she said tickling her daughter. Emina decided to be strong for her daughter, finally naming her after one month—Happiness. Her fragile marriage could not hold the strain any more though and her husband left her. He could not bare being around a child who he believed was not his as no one had a cleft lip or palate in his family.

Despite all the hurdles, Emina didn’t give up on her daughter. She sold vegetables so that she could afford to feed her. Emina’s and her daughter’s fate changed for the better when she saw a poster at her church indicating a free cleft lip and cleft palate surgeries being offered by Smile Train. This news could not have come at a better time. Although Betah was nine years old, she had never been to school because of her cleft lip and palate which impaired her speech.

“I didn’t want my child to undergo more torture in school, kids in the village had already done enough damage, they used to call her names and laugh at her, it made me sad whenever I saw my child playing alone. I just wanted to protect her.” Emina said as she wiped her tears. She could never have afforded cleft surgery for her daughter.

Without wasting time, she borrowed bus fare from her relatives, adding to what she had already saved. The two then set off on a 950km journey from their village in Kumba to Garoua. Happiness was lucky to be among the patients who underwent the free surgery, successfully repairing her cleft lip and palate.

“How can I every repay you? Thank you for giving me and my daughter a new chapter in life.” Emina told the team as she shook hands with Dr. Ong’uti, the maxillofacial surgeon who repaired her daughter’s cleft. “I want to get home as quickly as possible and enroll my child to school.”

How a Smile Created A Personal Mission

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New York, NYSmile Train supporter Lisa Fast shares her experiences with cleft and Smile Train.

After having such a positive experience dealing with my cleft lip and cleft palate, it has become my passion to help others achieve the same happiness in life. A life without a repaired cleft would be unbearable. Personally, I would not have made it through my years of soccer and would not currently be at the University of California, Santa Barbara. Sophomore year of high school I truly realized how lucky I was to have grown up with the treatment, doctors, and support that I did.

I initially became involved with Smile Train when I made a personal fundraising page. I set my goal as $5,000. I wrote emails and letters to family, friends, and neighbors creating awareness of the fund. Also, after my soccer games I would recycle water bottles from teammates. Because recycling is only a few cents a bottle, whatever I made recycling my mother would match. In place of birthday gifts, I asked for donations to be made. Between these sources I reached my goal of $5,000 in as quickly as one month. I then decided to bump up my goal to $10,000 because why not continue to help other children have a chance to receive a new smile?

Lisa and Mom2 A deeper involvement with Smile Train began after the tragic passing of my mother my junior year of high school. Because of her equal passion for helping others with clefts, our family created a Smile Train Memorial Fund in her honor. As of today, the total value of gifts on her page is $138,634.28 from 624 donors. Between myself, and now with the loss of my mother, over 590 children will be able to receive surgery. These numbers reflect the impact my mother had on others; she was one of a kind. The community continues to donate knowing how much mother would appreciate it.

After four years of fundraising for Smile Train, this summer I had an extraordinary opportunity to intern for them. For five weeks, I got to live in New York and come to their headquarters office every day for work. It was a special experience to see the network of people work together to maximize the amount of children receiving cleft surgery. I am thankful to have been able to contribute not only from a fundraising side, but also from the business side. I learned about so many different professional roles and skills in the time of my internship. I have been lucky to have had such a great relationship with Smile Train and it is because of all the opportunity they give me to stay involved.

Without a doubt, there are times I wish I did not have to face the challenges that come with cleft. Growing up I had to go to countless amounts of doctor’s appointments whether it was speech therapy, the oral surgeon, or the orthodontist. After nine years of braces, I was convinced they were never coming off. Last summer I endured jaw surgery. To recover, I needed to have my jaw wired shut for six weeks and was unable to speak. I always wonder what it would be like to have a “normal” lip. However, I always remind myself that I was lucky to even have had this treatment. In retrospect, I am thankful I was born with a cleft lip and cleft palate because it is the reason I got involved with Smile Train.

The happiness a fixed smile will bring a child is so empowering and motivating. They will get to attend school, have many friends, and be able to participate in extracurricular activities. Every child deserves those joys in life. There is no doubt that the children around the world who receive their cleft lip and cleft palate repair surgery will go on to live a remarkable life. Smile Train is an incredible international charity that gives three hundred and fifty children and their families an opportunity to live a better life every day.

A Cab Ride Changes a Life

Sonakshi Before and After

Patan, India—Sonakshi Arvind Kamble is a one-year-old girl from India who was born with a cleft lip. When Sonakshi was born her father, Arvind, was terrified. He said, “I was scared and had never seen this deformity so I was reluctant to hold the child.”

The neighbors told him Sonakshi would never be normal.

While Sonakshi’s parents took her to a local hospital for help. For six months Arvind and his daughter would make the trip to the hospital, but they were never told that cleft was treatable. On one of their trips to the hospital, the taxi driver who was taking them knew of Smile Train and told him that his daughter’s smile could be fixed. But Sonashi’s father, a driver himself, only earns 9,000 Rupees per month, about $150. He was nervous that he would not be able to afford the treatment. After an hour-long journey to Smile Train partner Godrej Memorial Hospital, Sonakshi and her family arrived at the hospital to good news—Smile Train could cover the costs of her surgery for free.

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Now Sonakshi, her father, and the entire family are very happy. Her father reports that their neighbors have been treating them much better now that Sonakshi’s cleft has been repaired. Besides commenting on how beautiful is daughter is, Arvind noted that he wants her to become a doctor so she can provide for herself and help others.

Twin Sisters Unable to Part, Even in the Operating Room

Twin sisters Chit and Chun before and after surgery with the surgeons who provided their cleft repairs, including Dr. Jaideep Singh Chauhan.

Twin Chit and Chun before and after surgery with the surgeons who provided their cleft repairs.

Myitkyina, MyanmarSmile Train partner surgeon, Dr. Jaideep Singh Chauhan, from CHL Hospital in Indore, India, shares the story of twins, both born with clefts, during his trip to Myanmar last month. Dr. Jaideep was in the country visiting local surgeons in Kachin, an isolated area of Myanmar, to help train, empower, and foster sustainable cleft care in the region.

With the help of the Embassy of India in Myanmar and the Health Ministry of Myanmar a team of three Indian Smile Train surgeons, including myself, worked side-by-side local medical professionals at Myitkyina General Hospital in June. Together we were able to deliver free surgeries to 84 patients of Kachin State.

Ten-month-old twin sisters Chit and Chun remain the most memorable part of my trip. Born to Ko Dwal Lar (father) and Ma Win Ittay (mother) in Shwegu village of Bhamo district in August 2013, both Chit and Chun shared the same facial defect— a cleft lip. Their parents could not get the condition corrected due to lack of awareness, information, and finances, but they discovered Smile Train through a local social worker. They then rushed to Myitkyina General Hospital where they were admitted, examined, and treated without any further delay. On June 20, 2014 both Chit and Chun received their cleft lip operations at the same time in adjacent operation theaters by myself and Dr. Pritham Shetty.

After a procedure that took about 45 minutes, both girls emerged with a corrected smile that will save them from a lifetime of rejection. Sometimes 45 minutes is all that take to change a life and in this case two lives.

They shared a womb, shared cleft deformity, shared the rejection and ridicule, until they found Smile Train. Then they shared the same moment of corrective surgery and now they share laughter and giggles.