“I want my children to smile, I want them to be able to live their life smiling.” Seheno smiled as she stroked her daughters black hair. Seheno, mother of four, has a cleft lip. Her daughter Mena, is a twin, and she also was born with a cleft lip and palate. Her youngest boy, Fitahiana, also born with a bilateral cleft lip and palate.
“When my twins were born the first girl came into life with a normal lip, the second was born with a cleft. The midwife brought them both to me and I immediately felt sad and nervous. I reflected on my childhood as a young girl who had a cleft lip. It was difficult. I did not want my daughter to go through the same hard times. When I gave birth to my youngest son Fitahiana, he was born with both a cleft lip and cleft palate. Again, I questioned why this was happening to me. I too suffer from a cleft lip- yet I did not understand why they would have one too.”
Seheno, and her two children have attended many Operation Smile missions. This one being a very special mission for the family. Her two children had already received successful cleft lip surgery from Operation Smile. Her son received cleft palate surgery this mission. This mission was very special because Seheno herself was selected to receive cleft lip surgery as well as her children.
“I waited for my two children to be able to smile happily before I received surgery. I wanted them to have a good start to life and a new smile. Look at them- they are just so happy. Seeing them makes me happy. Now me too, I can smile, I finally received surgery! I am thankful. We have a story, one that we want to share. Our story is of strength, of family, of love, and of determination. I never stopped loving my children.”
Seheno sat proudly and wrapped her arms around her two children.
“I was once asked why I think my children were born with a cleft lip and palate. To be honest, I think God gave me these children because he knew I would be able to take care of them. They are my gifts. I understand that not everyone will have the opportunity to receive surgery, I just want to express how thankful I am. We are an Operation Smile family.”
I met Bao Zoma, mother of four and grandmother of seven while taking a bike ride through the countryside. In September 2015 Bao Zoma brought her middle grandchild Sandra up with me to the mission in Tana. Now that Sandra has a beautiful smile, Bao Zoma is driven to find more children in need of new smiles. She has become a spokesperson for Operation Smile in the countryside where radios do not reach and many cannot read the posters that are taped at the health huts. When asked where her motivation to find more patients that suffer from cleft lip and palate comes from, she responds: “My grandchild once suffered from cleft lip, my grandchild Sandra was teased, dropped out of school, and was a shy girl. Now I can’t keep her in the house, she has many friends, and is constantly smiling. She is beautiful. I would like to give that gift, the gift of smiling to others like Sandra.”
Bao Zoma, recently recruited two other patients for the upcoming April Mission here in Madagascar. She walked 8 km, crossed a river and hiked another 2 km, to reach these patients, a young boy by the name of Gino and a young girl named Nordine. I am happy to say they will be joining me on the April Mission. Thank you Bao Zoma, for being not only a spokesperson for Operation Smile but an amazing grandmother.
Let me start by explaining a bit as to why I am passionate about Operation Smile’s mission. Operation Smile changes lives. I have witnessed multiple cleft lip babies pass away due to malnourshiment and starvation. Babies do not breast feed, mothers stop producing milk, and the culture of wet moms is not prominent or practiced often here on the East Coast. This leads to parents trying to find solutions on how to keep their child alive.
Last year I biked over 80 km to find children or adults suffering from cleft lip and cleft palate. I stumbled upon a young mother who was holding a tiny fragile baby. The baby cried and couldn’t produce tears do to how malnourished he was. I told her about the program and she agreed to meet me on the day of departure. ON the day we were supposed to meet to go up to the capital city, she never showed up. I worried, called the contact number I had with no luck. I continued with the mission and brought up 7 patients. Upon my return I biked back out to her village. Once there I spoke to the village chief of the village I found the small cleft lip baby. The mother greeted me silently and said, “My baby died two days before I was supposed to meet you”. I am not sure if we could have operated on this child, seeing that it was in such a state but I promised myself that I would try even harder to find all the cleft lip and cleft palate patients I could and bring them up to the Operation Smile missions.
Why do individuals not go for sugery? (seeing that the majority of the patients this year are older)
I think this is a great question. I can only speak for the conversations with the people I have had here. The majority are scared. The majority have not heard of Operation Smile because they live in the countryside, do not have phones, and do not have radios (electricity has also been limited to two to three hours a day in some villages). The majority of people tell me that they are scared because they believe that to fix cleft lip you take skin from your thigh and paste it on the mouth then sow it together. Not sure who this tall tale happened. Many do nt have the funds or money or strength to walk from their village all the way to a village where there is a direct brousse to Tana or Tamatave.
How am I finding them:
I start with flyers, and stories, personal stories. I have previous Op Smile attendees come with me to remote villages and vouch for all the great work Op Smile does for its patients. These “promoters” become the back bone of my search, they are my ears and eyes. Since they have been on the mission with me and we have a relationship they promote their story.
This year I used the churches, evidently you know that Madagascar has more churches then they know what to do with. I used the churches to get the message out to a wider radius. People trust churches therefore they trust the program the churches recommend, meaning they trust me. Trust is the glue to getting people to accept coming on the mission, sometimes when I talk to cleft lip patients and their families I feel like I am begging them to come, to trust me. Wee must consider Malagasy people have long standing assumptions and stories about foreigners. These stories definitely put a wrench in my search.
After the churches I talk to the chef fokotany, the chiefs of the villages. I explain to them the details of the program and they become my spokesperson.
Lastly I bike. I bike and I walk to every village I can carrying around 50-60 flyers handing them out. Some people just stare, some people in fear and others in amazement because of the fact I am speaking Malagasy. But in all they listen. That’s the most important. Sometimes I sit and have coffee with them, talk some more and slowly but surely one person mentions, “ oh yea in that village over there, you know by the red building across from the church theres a cleft lip child.” So I walk over and indeed there is that beautiful smile I am looking for.
I am an education volunteer so I use my students to get the word out as well. They have been great helpers in getting indivudals to trust me and not steer away at the sight of a foreigner.
Eddie another Peace Corps volunteer near my village and I gathered up some potential candidates for the Operation Smile Mission happening in Tana. We biked out one Sunday to the “ambanivolo” of Mahanoro and found three potential patients. When we arrived in the first town we asked around for the Chef Fokotany and let him know that we were in search of children who had cleft lip or cleft palates. He pointed us in the direction of a small ravinala house where a mother, father, and 6 month old child who had a cleft lip. We talked to the family about Operation Smile’s mission and the opportunity they would have to come up with us to be screened for surgery. Within minutes crowds of children hoarded around us staring inquisitively.
Word spread quickly and soon we had a list of 20 people that suffered from either cleft lip or cleft palates. The one that surprised me the most is a young boy who lives less than 15 feet from my house his name is Tino, he has already had the surgery once before but it did not go well and his parents are hoping this program will offer Tino a new chance at a smile.
On Thursday I woke up at 5 am and gathered my belongings- I met the two families, Delina and her mother from the “ambanivolo” of Mahanoro and Tino and his mother and father. We broussed up and on the way picked up Lezoma a 30 year old man with a bilateral cleft lip. Next we picked up Eddie, PCV, and four other patients. All together we arrived in Tana, the capital, and set them up in the Catholic Church. They are being hosted by the Catholic Church, which has been so accommodating and sweet by feeding and offering a warm place to stay for Op Smile patients.
On Saturday, we woke up at the crack of dawn and headed over to the hospital where we waited in line with 600 other individuals to get screened. Operation Smile is an amazing organization, but unfortunately they cannot cater to the large amounts of patients that showed up. They screen all the individuals and rank them by priority. I had the opportunity to talk to the Clinical Coordinator and shared my story. I shared the story of the Mahanoro group taking a journey and adventure to get here to Tana in hopes of having a chance at a new smile. The Clinical Coordinator was amazingly cooperative and understanding. She appreciated the braveness and adventure the group had been on and made sure that all 7 of the individuals Eddie and I brought up made it on the surgery list!
All 7 are scheduled for surgery for Tuesday afternoon. I could not be happier.
Julie Delina approved for surgery. Getting ready for her new smile 🙂