By Kaye Estoista-Koo
Images by Denise Llanos Dee
In a world where, annually, approximately 170,000 babies are born with some sort of cleft according to World Health Organization estimates, it is heartwarming to know that 120,000 patients worldwide are being treated yearly by Smile Train, a global non-profit organization.
And all those patients are being treated for free.
Smile Train, which has been providing free cleft repair surgery and comprehensive cleft care to children in over 85 developing countries since 1999, is supported financially through various fundraising efforts and many, many individual and corporate donors worldwide.
Susannah Schaefer, Smile Train’s CEO since 2013, recently visited the Philippines to mark 50,000 successful surgeries in the country since Smile Train started here in 2001. “I am inspired every day knowing we are creating a brighter future for our children like Vikas and Nisha (in India), Jhoanna, Joseph, Angel, and Sofia shown in the banners here today,” she said. Vikas and Nisha form part of Smile Train’s virtual reality videos that give viewers the chance to see what life was like for the two seven-year-olds living with untreated clefts and see their journey with Smile Train transforming their lives.
Jhoanna and Sofia were operated on as babies and toddlers while Joseph had his cleft lip surgery when he was 17 years old. He is now working in a BPO. Angel, a nurse in a local partner hospital affiliated with Smile Train, attended the event.
Country director for Smile Train Philippines Kimmy Coseteng-Flaviano, who spent six years as the one-woman team of Smile Train, remains committed. “We will not stop at 50,000, or the speech therapy sessions, or the orthodontic treatments,” she said. “We will continue to work for as long as we can, as long as there is a need.”
According to Kimmy, on Susannah’s first visit to the Philippines three years ago, the doctors caught the CEO crying, “I asked her why,” she recalls. “And she told me she was overwhelmed watching the surgery, that this is such great work that we do, and I am just overcome with emotion.”
Kimmy gave Aleah, who also attended the event, as an example, “Aleah, she is another successful cleft patient, who now works with a Smile Train partner organization, where she talks to donors,” she said. “She has gained confidence and she even danced with Ms. Universe contestants, and is now studying at a university.”
Smile Train’s partner organizations are another reason for their success. Kimmy shares the example of how they are working with a group in Legazpi, which is focused on a feeding program for undernourished, underprivileged kids, but when their director found more and more cases of clefts in her community, she tied up with Smile Train.
The work of Smile Train is heavily dependent on good word-of-mouth and active community involvement. Kimmy explains how cases like Joseph’s were brought to their attention, thanks to social media. Raising awareness about what they are able to do and offer is key for Smile Train because it is crucial that parents who have kids with clefts know about the help freely available to them, especially in the Philippines where those with clefts often can’t afford the surgery. “A lot still don’t know.,” she lamented. “But if people know, they can come when they are younger, when it is ideal for the operation.”
In their setup, partner hospitals are tapped in the community, so that any patient walking in can be treated and helped. Other times, their partner hospitals, both private and public, including charity hospitals, seek patients out, and help Smile Train screen and determine a patient’s readiness for surgery.
Smile Train doesn’t only do the surgery, they also help with pre-surgery nutritional and post-surgery orthodontic needs, especially in cases where the child is malnourished and needs to get healthier before he or she can be operated on. They also have patient scouts, who are sometimes cleft surgery patients themselves or have a child who underwent cleft surgery with Smile Train. These patient scouts recommend their neighbor, kumare, godchild, relative, and whatnot and become living testimonies of the work Smile Train does.
Since Smile Train works on speech therapy and orthodontic care for every cleft patient, Kimmy reveals how they ensure a stable physical structure in each hospital so that patients know who and where to look for, especially in cases of patients who need more than one surgery because of the complicated cleft diagnosis.
Marian Rivera, Smile Train Philippines’ ambassador for the past four years, also joined the event at Seda Hotel, Taguig. “I am proud to be part of an organization like this that is willing to help kids with needs like this,” she said. “In my small way, in all ways possible, I want to help more, and let it be known how more we can all help.” She also took the opportunity to turn over a donation in her name given by Kultura, another brand she endorses. “It’s not big, but when Kultura got me, and I love supporting local, they asked me what I wanted to do with the percent they would give me, so I told them to give it to Smile Train,” she added.
A certain percent of the sales on the opening day amounted to R70,000, which Marian turned over. She recalls what got her into Smile Train in the first place. “They approached (husband) Dingdong, but he told me I was a better fit for it,” she said.
Kimmy interjects, “A lot of patients say or ask if this is Marian’s foundation, and we are happy with that!” Marian was encouraged by her actor-husband. “He has his own foundation as well, so he asked me to take over, telling me, ‘it’s about smiles and bungisngisera daw ako, and you like to smile, it fits you.’”
Marian did her due diligence in researching on Smile Train. “I was already working with disabled children for another project, but when I saw their transformations, I got touched. I felt compassion for those who got bullied by their classmates just because they had cleft lip and they ended up not studying. Education is important so if a child loses his or her opportunity to learn, what is going to happen to his or her future? I went all in so now, there is not a month where I don’t ask Kimmy, I’ll check, what can I do, how can I help? In my small way as a celebrity, I can extend it to them, not just doing aura-aura on TV. I want to do my part. Kimmy knows I will do everything. I won’t stop, this is forever.” Kimmy admits they have gotten many new patients this way, all thanks to Marian’s Instagram posts.
Susannah is grateful for partners and ambassadors like Marian and even the group of Seda Hotels. Over the holidays, the hotels sold Christmas tree ornaments and included envelopes in every room for donations to Smile Train. Through efforts like this, Seda was able to provide enough funds for 34 new cleft surgeries.
Susannah, whose goal has been to expand their funding and donor base, could not be more delighted. She says, “We can keep it sustainable, because for as little as $250 you can repair a cleft lip in under 45 minutes. Our goal is to treat every child that needs our help. We will never look or turn away, so funding and resources are important.”
And Smile Train doesn’t stop there. Under Susannah’s watch, they have rolled out the Virtual Surgery Simulator, which is a tool that provides surgeons and would-be surgeons who are still crafting their skill, a full online resource to have access to all the different techniques on cleft lip and palate surgery, including peer learning and resources.
She is steadfast that the Virtual Surgery Simulator continue to provide a viable solution to training surgeons and allowing them hands-on training and instruction in a realistic, interactive modality.
As the Philippines moves beyond 50,000 surgeries, Susannah and Kimmy both hope that Smile Train can expand its care, treat more kids, and make sure all the support is available. And in a country with one in every 500 cleft and/or palate births every year, knowing Smile Train is there to help is something to truly smile about.