In many developing countries, children are often born with the burden of a cleft palate – a facial birth defect which occurs when certain facial structures don’t meet, somewhere between the third-month gestation in pregnancy. With high-stakes issues like the emotional and psychological effects of living with an impairment, and in some cases, a child’s mere survival hanging in the balance – offering life-changing resources could not come a moment too soon.In a recent interview, Smile Train CEO Susannah Schaefer talked about the work of creating smiles, and how you can make a difference.
Link2Us: What attracted you to the work of the Smile Train foundation?
We solely focus on treating cleft lip and cleft palate around the world, and in helping children and families effected by cleft, who in any other circumstance, would have no chance. Families oftentimes don’t know why their children were born the way they were, and don’t have any hope – and then come to know that there’s an organization like Smile Train which is benefited by donors in the U.S. and the U.K., and other more prosperous countries around the world, that can give them that second chance at life. I love the focus of the organization. I love the work we do, and I love how we do it. We have a sustainable model. We are efficient and effective, so it’s truly rewarding in all aspects.
L2Us: How did it all get started?
Our founder and chairman, Charles D. Wong is also the Founder of CA Technologies— one of the largest software companies in the world. He’s an extremely generous and giving man. From his own business success, and having come from China and being introduced to cleft (though he was not directly impacted by it), he saw how different organizations were working on and treating it back in the late 90’s, mostly by a mission-based model. At the time, foreign surgeons were flying into countries, treating patients, being there for only five days, away from their U.S. practices, and then they would pack up and leave. He felt that was not a sustainable approach to the problem.
Questions like, “Who’s there to help the children who didn’t make it to the front of the line?” and, “Who’s there for the follow-up care that’s needed to treat cleft?” where left unanswered. So, he created a different approach to the problem, and came up with the idea of creating Smile Train, which is based on the “teach a man to fish” approach model. There were available surgeons in countries like China and India, which is where it all got started, but there weren’t enough surgeons. So, through the “teach a man to fish” approach, Charles D. Wong provided the funding and resources to train more surgeons with the goal of helping more children – and that’s how Smile Train got started. He was the initial benefactor to the organization.
L2Us: Are there certain countries where children are more likely to be born this way?
There’s no known cause for cleft. A number of common facial birth defects occur when certain facial structures don’t meet at the three months gestation period in pregnancy. It effects one in every 700 births worldwide and appears to be more prevalent in the developing world where there’s a lack of treatment. Therefore, there’s a tremendous backlog. People who are left untreated appear to be in heavily populated countries like China and India, and territories like Africa, Southeast Asia, and Latin America.
L2Us: What are some of the daily struggles of living with this condition?
Ok, I’ll speak to patients and families in the developing world. Many will live a life of isolation. When you have a facial birth defect like cleft, you are usually left with a large hole in your upper lip, which makes it difficult to communicate and even breathe. Cleft can cause death. An infant with a cleft palate cannot suckle on their mother’s breast. Nutrition is a big problem in countries where we do our work. So, without that chance that Smile Train can provide through surgery, what can these children and their families do? We have heard stories over the years of midwives killing babies when they are born. Part of our work is the awareness effort. We need, especially in the rural areas, for families to know that there’s hope. And if we can point them to a Smile Train partner hospital where they can get expert care, then the child can lead a full and productive life. Our goal is to find children as young as possible, so the change is made within the first few years of life.
L2Us: What other types of services does your organization provide?
SS: Well, through our partner hospitals, we provide a grant program for compre- hensive health care. Many times, with a cleft, it’s not just one surgery, but different surgeries are required. We also provide funding for speech therapy, orthodontic care and nutritional support where needed.
L2Us: Could you tell us about World Smile Day and how we can participate?
World Smile Day was created by Harvey Ball, designer of the smiley face. His focus was to create a day when everyone smiles, to be celebrated yearly on the first Friday of October, and it has gained notoriety in the last few years thanks to Smile Train. The day is celebrated throughout the organization, and in conjunction with 1,100 partner hospitals and 2,000 surgeons around the world. Each year the celebration gets a little bigger as our efforts grow around the world. This year we are celebrating the creation of smiles. Our goal is to always celebrate the work that we do and the children that we help, but we are a fundraising organization, so our efforts are always geared towards raising awareness and also to raise funding.
This year we are going to have a really engaging campaign on social media. We are asking people to post a photo where they will use graphics or an actual sticker, which they can get if they attend our actual live event. The campaign is called ‘I Create Smiles.’
L2Us: How has your work as CEO changed you personally?
First and foremost, it’s the most rewarding work I have ever done. I have also met the most intriguing and extraordinary people around the world who we have helped. Especially in the United States, we are such a giving society, and to know that you have played a small part in changing someone’s life is just the ultimate reward. From visiting with our partners, to seeing a surgery transform a child’s life, and then being with a parent when they see their child for the first time after the surgery –just to think, I had some small part in making that happen, it’s just the most incredible human reward anyone can have. I’m a mom to a teenager who is 16 and a 12-year-old, and I think it’s just so cool for them to see the work that I do and how I can bring that work into their lives. To teach kids how to become more giving and how to make someone feel good, is so incredible and makes all the difference.