A day in the life...

One morning in February Mary and I were getting ready to leave my site for Segou. As I locked my door a young couple with a baby appeared in my courtyard asking for help. Because of a severe birth defect called palatoschisis, or more commonly cleft palette, their baby was unable to feed and severely malnourished. These unexpected pleas had been occurring quite frequently since we had returned from our trip home over the Christmas holidays. Before I left Mali I asked Adama, my work counterpart, to distribute a leaflet about a project that was performing free reconstructive surgeries on cleft palettes in Bamako. While I was in America, people had been making the voyage to Cinzana to inquire about the surgeries.
I told the couple that the project had left Mali and would not return until the following October to perform the next round of surgeries. The hope in their faces vanished in an instant as they humbly thanked and blessed me, and began the trek back to their village. We were upset by the feeling of helplessness, but like a thousand other experiences in Mali, the dying baby was put into the “numb” file to be dealt with at a later date. We arrived at the Segou office and Mary began reading an old Rolling Stone magazine while I read news about the upcoming Super Bowl. She found an advertisement in the magazine for a Canadian group called “Smile Train”. On a whim, Mary decided to email the group, and within minutes she received a response. Amazingly, the team of plastic surgeons would be in Bamako the next week performing surgeries. The Doctor agreed to perform the surgery if we could get the baby down from her village. I contacted Adama and told him to get in touch with the young couple as soon as possible and tell them the good news. Another family was notified of the project and we made plans to meet in my village and take a bus down together to Bamako. Everything looked as though it would work out fine, and we were excited to actually be doing something that directly impacted lives.
I knew the baby was sicker than I had first assumed when it remained silent for the entire ride down to Bamako. I was shocked when the baby was unwrapped and placed on a scale in the hospital. She weighed barely 2 pounds and her skin was slack, she was in serious trouble. I had to leave the room for a moment to compose myself or all the things I had pushed into that “numb” file would suddenly come tumbling out. When I returned the Doctor took us to the side and said the baby wouldn’t have lived another 48 hours if we wouldn’t have brought her with us. They immediately began feeding her through a tube and said she would have to put on some weight and get healthier before they would consider doing the surgery. We were very happy to have helped saved the baby and looked forward to her being healthy enough one day to receive her surgery. It was decided that the baby and mother would remain in the hospital in Bamako for a few weeks until she got healthy enough to reassess the diagnosis. Meanwhile the other family was being questioned by the Doctors.
Both families had been very overwhelmed by the entire process. They come from very small villages up north and the shock of being in an actual hospital with western Doctors was visible on all their faces. We helped translate as much as we could for the doctors, at one point Mary was recruited to explain skin grafts to a Malian girl who looked at her in disbelief as she described the process. After the initial consultation we were again pulled to the side and told that the child had a disease called NOMA.
NOMA is a disease in poor countries around the world where malnutrition, unhealthy drinking water, and close proximity to livestock are common. The disease begins as an infection of the gums and then eventually eats its way through most of the tissue of the face, leaving the patient deformed. Because NOMA also results in lockjaw, the patients can’t feed themselves and become so malnourished that their immune system eventually shuts down and they die from any one of a million diseases here in Mali. It is a horribly painful way to die and it is even more horrible because it is easily treated with an improved diet high in protein and antibiotics.
The second child, Safi, had already lost most of her face leaving her jaw and eye exposed to the elements. She walked around at all times with a covering on her head. Her bottom jaw had already locked, but thankfully had jutted out just enough to be able to drop a few pieces of rice onto her tongue. Her hair was rust-colored and her belly was distended she was slowly starving to death. After speaking with the doctors for a while it was decided that Safi and her family would go to a special NOMA treatment facility to educate them about the disease and begin the long treatment process. It will take several different surgeries to fix her jaw and then several more to repair the facial damage. A Malian doctor called Traore Hamady arrived to explain to us that a car would pick us all up and bring us to the treatment center. The family would stay for a week or so and then return several times as the treatment progressed. The family agreed to go and we all walked outside to find the car that would take us to the treatment center. We all got in and we were on our way. I then had the following conversation with the driver. (Translated literally)
Me- Man friend where are we going?
Driver- You speak Bambara?
Me- Yes a little.
Driver – Oh my god red ears speaks Bambara
Me- Man friend doctor’s house is found where?
Driver- What’s your last name
Me- (Sigh) Diarra
Driver- That’s not good, Donkey’s have that last name
Me- My mother, thank you…what area of the city is the treatment center found in?
Driver- Diarra man it is in Koulikoro!
Me- (Sigh)

For those of you who don’t know, Koulikoro is not in Bamako it is a town about an hour drive north. So, we settled in for the ride. About 20 miles before Koulikoro, the driver abruptly turned off the road and headed into the bush. The gravel road became dirt, and then became stone slabs. We proceeded through a ravine in the mountains slowly making our way to this treatment center. I remember wondering why in the world someone would put a medical clinic in the middle of nowhere in the mountains in Mali. Finally, after about 30 minutes we reached the NOMA village. It was a series of small huts, surrounding a proper medical center. It was flanked on the left by a large swing set and merry-go-round for the children who inhabit the village. The car pulled up to the curb and 3 disfigured children quickly approached. They were very happy to see us and they immediately began preparing a hut for the new family that had arrived. Some of the children had been given up by their families and they had been at the center for years. It was one of the most surreal experiences of my life and I will never forget that ride into the mountains.
After the family was comfortable in their new place, we said our goodbyes and we left. We arrived at our Peace Corps house exhausted from a long emotionally draining day. The next day we would return to the hospital and check on the baby, give the mother money to get back to Segou and head home. When we arrived we discovered the woman hadn’t eaten and she had spent all her money on bottled water to mix with the Simulac that they were feeding the baby. I tracked down a nurse and asked who I could pay to feed the mother because she wasn’t able to leave and find food. She said she didn’t know, so we walked outside and found a woman called Hawa Dembele selling food next to the hospital. This is why Mali is great, we walked up to her and began insulting her and then asked if she would bring a patient food for us. Without hesitation she agreed and promised she would bring three meals a day as long as she was in the hospital. I handed her, I am sure, way too much money and we went back in to check on the baby. We spent the rest of the day at our office in Bamako finishing work we had neglected and decided to go back to Segou the next day. We were hesitant to leave the mother alone in a strange big city. We woke the next morning and returned to the hospital. Hawa had kept her word and brought the meals and the mother seemed happier. We gave her money and promised to call and check in regularly. We left and returned to Segou. They stayed in the hospital for 3 weeks and then were released and returned to their village.
My morning routine has remained constant since I arrived in this country. I awake as my host mother begins pounding millet and wash. I walk to the wall that separates our houses and give the morning greetings and blessings. Usually Adama walks over smiling and shakes my hand. Yesterday, he wasn’t smiling as he approached me. His head was hung low and the mood at the house was one of melancholy. He told me that the father of the baby called early that morning to say that she passed away. I blessed him and the child and went to tell Mary the news. We didn’t speak for a long while and both our eyes were red the entire day. The baby had only been in our lives for a couple of days, but she had touched our lives immensely. I have attended dozens of funerals here in Mali, many of which were for children, but this was the first one that really bothered me. I tried to put it in my “numb” file but it snuck out. We tried really hard to do everything we could….Her name was Djomine Diarra she only lived 43 short days.
Safi, will begin her surgeries by the end of the year, her diet is improved and she seems more energetic. We go and visit the family when we can and she no longer wears her head wrap. The surgeries will save her life, but the scars will remain forever. If you would like to learn more or donate to the doctors that treat these diseases please visit www.smiletrain.org.