Ekow's Story

 A few months ago (July or August maybe) I posted about my time with Operation Smile and this boy Jake and I helped. This is is Jakes post, from his blog, about everything. I still feel like words (whether they be mine or Jakes) cannot come close to expressing exactly what this experience was like...maybe
he can say it better then I can.


Ekow's Story

A few months ago I was told that Operation Smile was once again coming to Ghana and this time I wanted to participate. Immediately I thought of a particular boy in my community that has severe facial burns from falling in a fire when he was 7 due to an epileptic fit. I had seen him around on the beach and often dancing outside of the spot when the generator was running and music was being played. I knew that this was not necessarily a case for OpSmile’s mission which focused on cleft lips and cleft palates but I decided to ask the person in charge if it was OK to bring him. She, Kia, said it was OK and that nothing was promised but at least we could have him looked at, get a medical file, and recommend him to another program. I told the assemblywoman in my community about my plans to take the boy, Ekow, now 17 years old. We talked it over with his ‘aunt’ and an uncle and then told Ekow about this opportunity. He was going to go to Accra at the end of July with me to see if we could find him help. Leading up to the program I also biked from village to village with the poster asking for people with the pictured conditions. I found a 9 year old girl named Princilla who had had cleft lip surgery but still had a cleft palate. I also left posters at Agona-Nkwanta clinic and talked to doctors at the hospital in Takoradi where we were suppose to assemble on our travel day.
On the morning of July 26th, Ekow and I took the first car out of Cape Three Points at 5AM, Princilla and her mother joined us later along the road. This was likely Ekow’s first trip out of the village in years. The excitement or stress triggered his epilepsy and he had a fit in the car before we got to Agona-Nkwanta (our market town and travel hub). Once at the station and after Ekow slightly regained his composure he was taken out of the car only to have another fit while I went to find others we were meeting. I came back to look after him and think of how we were going to get him to Takoradi and eventually to Accra. The people at the lori station stared at him and kept their distance, one man even refusing to give me his chair to let Ekow sit in it. I got a better understanding of how he was treated and how his epilepsy was seen more as contagious evil spirits or juju rather than as a medical condition. Luckily a friend of PCV Sarah Carbone had a truck and was nice enough to give all of us a ride from Agona to the hospital in Takoradi. Unfortunately the strangers at the station were not the only ones scared of Ekow and his condition; the uncle who was suppose to meet us at the hospital to travel to Accra as Ekow’s guardian turned off his phone and didn’t show up as promised (he dropped the the ball here but has since proved to be Ekow’s most reliable family member during these last few weeks). After receiving some help from the Effia-Nkwanta hospital staff with Ekow, Sarah’s friend gave us (PCVs Sarah, Shilpah, and myself, Princilla, her mother, and Ekow) a ride to the new meeting point in Sekondi where we met up with the other OpSmile patients of Western Region. Ekow, although concious, seemed very tired and out of it most of the trip after his incident.
We arrived in Accra and went to the shelter at Korle Bu hospital where all the patients would be staying. Thankfully one of the other men from Western Region took it upon himself to look after Ekow since his uncle was a no-show. The next day registration began at Ridge Hospital. Ekow was very shy and stand-offish, often found in corners by himself and covering his face. His uncle still hadn’t come or called. Ekow was not amongst those registered the first day. In the afternoon I got a hold of his uncle and told him what “family” meant to me and what it should mean to him. He said he would come the next day. As a backup plan for another possible letdown I contacted the Cape Three Points assemblywoman and she arranged for Ekow’s brother and “aunt” to come to Accra. The next day was again registration. Ekow displayed his same characteristics from the first day and wore the same dirty clothes he had spilled Milo on from his episode in Agona; he had to be reminded to stay in the registration line to keep moving up. Finally his family came. I had been helping registering patients so I interviewed Ekow and his uncle, Richard, about his condition and his past. I had only known a little bit about his past. I learned much more from his uncle. Ekow’s parents were apparently both drinkers and smokers, even during his mother’s pregnancy with him (likely explaining his epilepsy), but had died sometime around when he was ten. Since then Ekow has been on his own, staying with his brother previously in C3P but now living in his father’s abandoned house near the shore. No one had cared for him. He helped the fishermen pull in their canoes to get dashed fish, trading his rewards in for rice and fufu. He had never gone to school since people feared his epileptic condition was contagious and his face frightened others. He could not read, he could not write, and he could barely be understood when he spoke. Despite being in a fishing community he could never go out to sea with his condition. He was an orphan in need of help.
All the doctors, nurses, and volunteers at the program took an interest in Ekow’s case. We were about to see how much the kindness of others could help complete strangers. Ekow was approved for surgery on Day 2. So much for just getting a recommendation, he was about to get some immediate results. A Russian surgeon, American anastesialogist, UK medical student, Italian nurses and Ghanaian assistants helped with the surgery that I gratefully got to watch. When healing from his initial burns Ekow’ neck had formed scar tissue connecting it with his shoulder therefore limiting his ability to turn his head. The surgeon removed this scar tissue and gave him the ability to fully turn his head in either direction, something he hadn’t been able to do in over ten years. Ekow’s right eyelid had virtually melted away from his eye and he had been forced to sleep with his eye open; he was losing his vision as a result. The surgeon split Ekow’s upper eyelid in two and resowed it in such a way that he would now have a funtioning upper and lower eyelid and actually be able to close his eye. We were thankful for just this but the kindness of strangers was not over.

This is Sarah and I with Ekow before his surgeries. We only expected to be referred to another program so to actually be approved for operation during this trip was a real surprise.

A Ghanaian doctor, Dr. Kwame, who also was helping out with OpSmile offered to have Ekow stay at 37 Military Hospital for the two weeks needed for his eye to properly heal. He would stay much longer than two weeks. Doctors at the hospital decided to do a skin graph, taking tissue from his leg and placing it on his lower lip which had also melted away from the fall in the fire leaving him without front teeth and constantly drooling. He would stay another few weeks to recover. Now, October 3, 2012, Ekow is awaiting another skin graph for his upper lip. He is also receiving treatment for his epilepsy. The Lions Club of Ghana, a local chapter of an international volunteer organization, had been helping out during OpSmile. They were kind enough to find funds to sponsor Ekow and his uncle while they stay in Accra. Other volunteers, including my Accra homestay, have donated clothes, shoes, and games to Ekow. The other patients he shares a room with have taken to looking after him when his uncle and I can not be around. They have told me how he plays cards with them, laughs when others have to receive shots, watches movies in the evening, and even showed off his dancing skills at a hospital party across the hall. He doesn’t seem to be as shy as he initially was. We continue to search for ideas and programs for after he is discharged.
People have congratulated me and thanked me for what I’ve done for Ekow. I tell them I am the wrong person to thank. This success story is a result of the collaboration of people from America, UK, Ireland, Russia, Italy, South Africa, Ghana, India, and Kenya. I have absolutely been blown away by the kindness of complete strangers for Ekow and all the other patients. I know that Ekow is thankful and will walk away more than just a person with a new face but will be a new person. I know I am.
As for the community of Cape Three Points, people ask about Ekow, his condition and when he’ll return. Even though he hasn’t returned yet I think people have changed their attitude towards him. They realize that if complete strangers can help him then his own family and community can too. I am not sure what is best for Ekow, if he should return to C3P and his life on the beach or if he should be taken to a shelter or program. Regardless I hope to have a community meeting to discuss his case and how people should change their perceptions of people who are different. If he returns to the community hopefully we can have a party. Ekow really likes to dance.