We have begun what Dr. Gary lovingly calls “Noma Season”. This is the time in the outreach when we begin our multi stage surgeries to repair what has ravaged so many here in West Africa. In the following paragraphs it is my hearts desire to explain the horrors of this disease, and the people in which it has struck that have captured my heart. Think of it as a case study---I’ll give the background information and a few case examples...we’re never too old to learn, right?
Noma (Cancrum Oris) is a devastating gangrenous infection that mutilates the tissue and membranes of the face. The word Noma derives from the Greek "voun", meaning to devour, emphasizing the rapid progression of the disease. In Ghana it is called the “melting disease”, appropriately named as it literally melts off the tissue, bones, and muscle of the face. It is an opportunistic infection which typically strikes young, severely malnourished children between the ages of 2 and 5. In almost every case shortly before onset they have had an illness such as measles, malaria, scarlet fever, tuberculosis, or are HIV positive. The disease begins as an abscess typically on a mucus membrane such as the gums or inside the nose. This is an opportunistic bacteria, which means that it lives in every single person’s mouth on this earth, it is just given the upper hand due to a weak immune system and malnutrition. In a few days time, the abscess opens up and the infection rapidly spreads to the surrounding skin, and tissues, even eating straight through muscle and bones. Of these victims, 90% will die from the acute infection (sepsis), dehydration, and malnutrition. There are anywhere between 100,000-200,000 cases of this each year with only 10,000-20,000 of them surviving. Thats right, faced with this illness you have only a 10% chance of making it, of fighting it. What strikes home the hardest and something I want you to understand is that Noma is a preventable disease. It is a disease allowed to exist by the cornerstones of poverty: lack of clean water, basic sanitation, vaccinations, proper nutrition, and basic healthcare. Something I want us all to realize is that this horrific disease could be prevented by simple vaccinations, and during the acute phase a simple coarse of antibiotics. That’s right, something that you or I go to the doctor and have in our hands within hours, Penicillin, could stop this ravishing disease in its tracks if given in the first 2-3days. Something that may cause you to stop and think, maybe even put it in further perspective; the last time the world outside of Sub-Saharan Africa saw Noma was during WWII in the concentration camps---Those are the types of horrific conditions that foster this disease.
For the 10% who survive the acute phase, those lucky ones who are able to maintain hydration, receive proper nutrition, or are able to get a course of antibiotics their entire life is changed in one week. In just a few days they are left with a severely disfigured face. A sentence they must carry around with them for the rest of their lives. Every time someone looks at them, the first thing they will notice is the hole in the side of their face, their missing nose, lips, gums, and teeth. They are subject to ridicule, outcast, and abandonment. Some, due to scar tissue, will have jaws that lock down, ankylosed, forced to eat mashed food through what they do have left fighting for survival. For some they will never have anyone treat them as a human again, that belief that they are cursed, or from the devil will start to take hold in their life. How could you be rejected every moment of every day of your life and not begin to believe it for yourself? Some come to us broken, and for them, this place is a solace. A shelter in which they can just be themselves. They come, and see others like them. Others who understand their hurt, who know what they have been through without having to say a word. Where people look them in the eye and tell them they are important, special, and most of all loved. Others come to us with alive spirits, somehow miraculously having been able to persevere and maintain a somewhat joyful life. Can you imagine a life like this? When I try, I am ashamed of my vain ways. I am the product of a culture that teaches us to pay great attention to our appearance. To be concerned when we go out with a “bad hair day” or a pimple on our face--how would I cope? How would I live my life with half of my face mutilated, each day being rejected by all those around me? These beautiful human beings are cast out, alone, hurt, longing for the love of someone, anyone, who will recognize the human heart in them. Despite our best efforts we can never make them look completely normal, but what we can do is try to make them as normal as possible so that they are accepted. Our goal is to make them look human again, to convince the human eye to look past their deficit and see their spirit. They won’t make Miss Africa or the cover of Time Magazine, but they will be able to go to the market, to walk along the roads in their village, and maybe have a friend.
These surgeries take time, it’s a waiting game, a marathon of sorts. Each complex surgery is separated by 21 days--three weeks is the length of time it takes for our miraculous bodies to recreate a blood supply and latch on the the tissue we have moved before we can sever it from it’s original source of oxygen and nutrients. Sometimes even I am confused when I wrap my mind around what we are doing, restructuring and recreating the face with parts of the scalp, neck, thigh, ribs, and chest. It truly is a jigsaw puzzle pulling pieces from all over, and our expert is Dr. Gary Parker. With over 25years of work with these patients, he has it down to a science that few others understand. The way he can think outside of the box, come up with a plan and execute it is astonishing. The way he explains it to patients is using the metaphor of a journey. Before he begins their surgeries he talks at length with them about the journey in which he will take them. That what he is about to do will seem worse before it is better, and there may be days they are unsure, but that they have to trust us. That they won’t understand the complexity of what we are going to do..but that each day we will put one foot in front of the other and take those steps together.... How hard must that be when you have never been able to trust anyone in your life and here stands this group of people on a big white ship that are asking you to live with them for months in their western world and put your faith and hope in a group of strangers. But they do, because it is the only hope some of them have ever been given. Hope to look normal, hope for a better life, and hope to experience love.
So there it is, basic information about the disease that has wrecked my heart. I am overjoyed to tell you about the group of Noma survivors who we get to pleasure of doing daily life with for this time:
Bed 3- “F”--The man who loves to color and just wants a wife....
F is one of the most joyful, wonderful people I have ever met. He lives far upcountry and makes his way in life by farming. He has this zeal for life that warms my heart and truly makes each day with him so amazing! He is an extrovert, and has made friends with almost every patient that has come through the ward doors. From day one he has talked about how he is going to “get his face fixed, and then find a wife to love”. He is an expert with crayons and water colors, and has loved teaching his ways to anyone who gives him the time. Several nurses have been working with him, and my heart overflows when I get to tell you that at 51 years old F learned the letters of the alphabet and how to write them. This is huge, for a man who said to a nurse one night, “I may have never known the door steps of a school, but I can color”. For weeks F has been practicing diligently, and two weeks ago wrote his name for the first time on a legal document to consent for his 2nd surgery. The concentration in his face and determination was beautiful--so there it sits in his chart, his beautifully written name resting next to his last consent form where he simply gave his permission by his thumb print in ink.
Bed 8-”A”The quiet farmer who has a constant smile and quiet observing eyes. “A” came to us with his head down, unable to look others in the eye. His life spent farming, has not been the same as “F”s--not nearly as kind to him. The second night he was here one of the night nurses startled him trying to take a set of vitals. “A” threw his arms up in defense, ready to take on his challenger. It scared them both, but the sad reality is this---he has lived a life in which he had to be ready at any moment to defend himself. His month of living in D ward has began to change him. He’s happy, loves to play games, and interact with the patients and nurses. He has had a rough go thus far, even with us, the skin we have tried to move to repair his lip has not taken well. We are heading back to surgery today, and even then, may have to start back over. I pray each day for this guy, that he will heal well this next time around, and that we can transform his physical appearance (even though I know we have already started on his heart)...
Bed 1 “M”--The woman without a nose and the most loving cousin anyone could ever ask for. M is now 14days out from the first surgery that will completely change her life. She lost her entire mid-face when she was 2. Now 31 years old, she has lived in outcast her entire life. She will be with us until the end of the field service, and needs a least 2 more surgeries to complete what we have started, but it’s a journey. She has an amazing friend by her side the entire way, and we all have fallen in love with her as well. Right now she has lots of dressings, a feeding tube and a tracheostomy to maintain a constant airway. With the trach, she can’t use words to communicate, but taking care of her each day she speaks to us with her actions. Even yesterday, as I sat with her outside, she was concerned for ME, and my pale white skin in the sun. She has had more surgeries in one go then most have had in a lifetime, and she is still caring for others, putting their needs ahead of her own.
Bed 13 “D”--the kid who was abandoned. Imagine being six years old and having been through more things than most will ever have to in their entire lives. By the time he was six, he had been ill, and noma had ravaged his face. His father, believing he was cursed and was better off dead tried to drown him. When this didn’t work, he was thrown out into the street--where a woman thankfully took him in. He was brought to the upcountry screening trip, and on the way down to the ship for surgery almost perished. He came to us with pneumonia, severely dehydrated, the open hole in his face bleeding, and so very scared of everything. He spent a week with us in which we gave him the care he needed, and sent him to our HOPE center to finish recovering before we could do his surgery. It is here that this little man transformed. He is no longer the scared, cowering little boy I met back in January. He is rambunctious, full of life, hilarious, playful, and so very loving. He has been changed, transformed, made new by this ship in the weeks he lived onboard.......even last night as I visited him at the HOPE center where he waits for his second surgery, I was forced to realize how much I love this little boy, how much he challenges me, and makes me realize how his life would look had another human being not given him a chance to fight for survival.
Bed 15 “I” The man who is a hermit. Forced to live alone in a shack he withdrew from society, from normalcy, from life--landing somewhere in his mind in a childlike state. Angry, hurt, and lashing out when things were out of his control. The one and only thing in this place that brought him pure joy was coloring--and boy did we color. Pages and pages littering and lining the walls surrounding his bed. After nearly 2 months he was healed and left us right before Christmas time, and has since decided to leave our HOPE center due to behavior issues. I know that we couldn’t change everything for him, we couldn’t take away all the years of hurt that made him the way he was.....but for the time we had him, we were able to love him, to give him a new nose, and to show him what it was to be cared for.
I know this was a very long post, but I hope you stuck with me. That you realize that I am unable to give justice to life here no matter how many words I use, or how many times I retype my thoughts. These people, this place, have changed my life. I am in awe of the amazing things I get to see every day. That no matter how much I give, how much I sacrifice, It will never be enough to repay what is being given to me.
