Noma season

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. 

What's gotten me lately.....

Life on board this ship is a simple existence. It is taking life and breaking it down to its core, void of the distractions of the first world. Here we live in a tight community, go to work literally 30 seconds away from our cabins, have all of our meals prepared for us, wear the same clothes we brought in suitcases, spend our nights with games, movies long talks, and sunsets. We fill our weekends with adventures off the ship with groups of friends that we didn’t know 6 months ago or for some even a few weeks ago. We don’t have to commute, need to worry about bills, the best new coffee shop, or worry about the current trends. We get to live simply-- to do life with one another, worshiping our God, and serving His people in Guinea. So life here is slightly predictable, it has similar trends week to week and is a peaceful place to be. It’s honestly the most content I have ever been in my life. I fit here, and I want to share with you just a few things that have spruced up my life this week onboard the Africa Mercy:

--Granola---> I had some intentional time with a wonderful lady on board this past week and as we chatted we made granola. This seemingly unexciting thing brought my heart so much joy. It reminds me of home, of our little nest of an apartment in Tower Grove, and of a dear friend/roommate who makes the very best heart warming granola (shout out to Whitney Riley-Kline-- wooot woooot)

--Guitar lessons---> Yes, one of my documented life goals is in the works. My patient, loving, fantastic friend Lydia has taken up the huge undertaking of teaching me to play. I have a few cords down, can switch cords with a pause between, honestly can’t play anything resembling a song yet, but I have loved every single second of trying. 

--Pre-donation testing for blood--> That’s right! I am one step closer to being able to donate blood. Turns out that they might want my A negative blood after all! I am not going to lie, I have been praying for this since my arrival, and when I received the note on my door yesterday I did a small leap/dance/jig in the hallway. 

--Notes from friends---> my two bests that left on the 9th gave me a gift before they left. They wrote out a note for me for each day remaining in the outreach. So each morning, before I even put in my contacts, I take the one from the day before, tack it up on my wall, and with great delight read the message for that day. It has been an awesome way to feel connected to them as they go back to daily life on separate continents. The realization is this, we are three friends, on three continents--undeniably one of the hardest parts of having friends from all over the globe. 

--Camping--> I have always loved camping, grew up doing it, and just for some odd reason loving sleeping outside, dirt on my feet, washing my face with bagged water and rocking greasy hair......This past weekend we spent a night on the island (view my older post/photos on the island) and somehow sleeping in a hammock, cooking meals together over hot coals, and sitting around a campfire on the beach was the best medicine to my soul. I feel so refreshed, happy, and ready to face this week. I may or may not have already began planning a camping trip upcountry for March......what can I say? When in Africa....camp?

--Discipline--> I am a wild horse at heart, stubborn and rebellious and God is breaking me of that. It is hard, but so wonderful. He is teaching me daily discipline in so many aspects, and my need for something that we should learn as children: Self-discipline....So if you are prayerfully minded/inclined/need some discipline too, that is something that you all can pray for. That I just continue to give it up, stop fighting his loving hands, and just rest in him....

What’s gotten you this week? I would love to hear what’s heavy on your heart or lightly dancing on the periphery---send me an email!

The world needs LOVE

I hope you felt loved this Valentine's Day........Not necessarily in the typical "valentines" sort of way, but loved by a friend, appreciated by a coworker, made to feel special by someone, or even just captured by the smile of a stranger. One thing is for sure, the world needs more love and people who want to share it. This Valentine's Day felt different far away from all the commercialism and the Hallmark Holiday at it's finest but was very well spent. I am so thankful to love time with friends and the season of life in which I'm currently living out each day. I came across these photos online, and have been trying to figure out the best way to share them. These are award winning photos taken by Stephan Vanfleteren of some of my favorite patients on the ship. I had the honor of taking care of several, and you may even recognize my very favorite guy "T"......I hope you enjoy them, and that they capture your heart, make you think twice, and also make you fall in love with the people of Guinea....So today I hope that you know that no matter where you are, someone loves you and you are making a difference in their life... To enjoy click here .

Pieces of my heart......

This past week was tough, tougher that I could have imagined. My two bests, the two gals I have done life so closely with for the last 6 months were leaving and I was staying behind on this big ship. It was a funny spot to be in--a massive mixture of emotions culminating from all over the board. As sad as I was and am, I still have this overwhelming peace that it will all be okay. That I am answering God’s call to stay, and that even though I can’t figure out what the heck my purpose is yet, that I am being obedient in staying. During one late night chat under the stars I described it like this to Jenny. That I feel like all my life, sometimes (or to be honest most times) without me even recognizing it, God has opened doors and asked me to step through them, and I have done so. Sometimes blindly, sometimes with sadness, other times scared, and a few times confidently---but maybe a little too confidently with this one. I feel like I bolted up a set of stairs, heart pounding, threw open the door and then looked around at that exact same moment as my gut sank....what the heck was I doing here? What is my next step? It’s as if the ground slipped away and I could only see as far as my big toes...but that’s the life we are called to right? That we can’t always see--that visibility may be small or completely non-existent, but what we are left with is faith. Faith in him and that he holds it all together. Faith that he provides for his kids when they follow his lead and even when they don’t that he doesn’t abandon us or look the other way. Faith that he knows exactly where I stand, what is in my heart, and what I need--even when I don’t know myself. So as the day grew closer to Saturday there were tears, lots of them coming from this girl, a girl who doesn’t like to cry, especially in public. Tears over simple life joys like grinding coffee, a beautiful song, the idea of love, or the thought of saying goodbye to people who just get you. That silent understanding that forever friends have. More tears flowing Saturday afternoon as we stood out on the dock, and finally a damn breaking as they drove away, headed away from this place and back into the western world.  My tears and puffy eyes, as unflattering as they are, are evidence that we can have glimpses of heaven on earth. That we can touch each other so deeply that it feels like roots are being pulled out of your heart when you must part ways. So back to my room I went once the Landrover disappeared from view, balling like a two year old throwing a tantrum, and planted myself on the floor full on sobbing, reading the notes they had left behind with tears streaming down my face and feeling simply miserable for myself. Then it hit me like a load of bricks, how selfish am I? Here I am, a mess, and there are people literally 30 seconds down the hall in D ward who have never known the type of love I feel for others because they were dealt a different life card. Because of a physical feature no one has ever given them the opportunity to feel loved, to feel cared for in the way that these beautiful women of God cared for me. This is where God stepped in, put a loving hand on my shoulder, and in a sweet yet direct voice said “Pull it together Hannah. Stop feeling sorry for yourself, you are insanely blessed, you have life, you are exactly where I want you to be, there is work to be done, people to serve, and other lives to enter here--so seriously sister, Pull it together”......So that is where I am resting now and it feels so sweet. Yes, I can be sad that my friends left, they touched a part of my life that few others have--but there are so many other amazing people here to do life with. God has provided so much in the last two days, and has put so many things on my heart. It is going to take being intentional, being vulnerable, walking out of my cabin each day with an open and tender heart, but he has big things for me here. I just know it, and it all starts today, a fresh new day ready to be explored.

Life in photos

This is "M" a patient who I took care of back in week 1 who returned for her second surgery

What a cute little peanut!

Don't let this cute little munchkin fool you---he is trouble

Mr. A who has been with us since September may be heading to the Hope Center in the next few weeks!

Before shot of B with Dr. Gary, Dr. Thomas and Jonathan our best housekeeper 

After shot of B with Deb

Yes, that is T...and yes, he has gained almost 20kg since we first met

Grandma H before her surgery

Cleft Baby!

My friend Jen and I were walking home from the market 2 weeks ago and I heard "Annah!", turned around and this lovely young man was standing there, beaming--happy to show off his newly healed lip. (He was getting a new haircut)

Emily, Pat, S, and his momma. This is the most epic "blood brothers" picture I have ever seen. These two will be forever connected by that gift

Halfway...

So here we are, a tad over halfway through this outreach. Every day joy happens here, lives are changed, and human spirits are touched. It’s been an amazing stretch marked by so many wonderful patients, caregivers, dayworkers and volunteers. When I say that lives are changed I don’t mean just our patients, but ours also. We have given up families, friends, and lives at home to be here, and it isn’t without reward. I have made some amazing friends to share this season of my life with, and I am changed every single day by their love, encouragement, friendship. The patients have taught me more in the past 5 months then I could have ever imagined. I have seen these people hurt, witnessed heartache, come to know the faces and hearts of those who have been abandoned by their families and communities for something out of their control, witnessed their longing for love, their faces in joy, triumph, and sadness. I have cried alongside them and celebrated with them. I have been a part of surgeries that I never thought would have been possible even in the western world. I have seen 4 different patients have their whole bodies blood volume replaced with that of crew-members. I have watched beautiful children and adults faces as we tell them that we unfortunately cannot help them, and I have had to give that all over to God. I have learned so much about Him since planting my feet on West African soil. His constant provision, His love, His character, His grace, and His hand on my life and those around me. As we pass this halfway mark it is bittersweet. I have watched friends come and go with little pieces of my heart. I have watched people walk away from the ship defeated, holding only the fact that there is no help for their physical problems, and I have watched patients miraculously heal and head home ready to start their lives over. New--healed--changed. Several of them have been patients who came to the ship as a last resort, death staring them in the face and fought a good fight. I have seen the lips of both babies and 50 year old women repaired, tumors removed, legs straightened, VVF’s repaired, and sight restored. 

This past week my heart has constantly felt on the edge of breaking, like a damn just on the brink of overflowing. Trying to narrow down what exactly those feelings are, I’m honestly not quite sure. It’s this mix of insane love, joy, sadness, excitement, anxiety, and a whole other hot mess of emotion. It’s that feeling you get in your gut when you know things are about to change, but this time in a bigger way. Again, friends are leaving that I have literally spent every single day with for the last five and a half months, but it’s also mixed with my decision to stay. Yes, you heard me correctly-- After much prayer I have decided to stay in West Africa for two extra months and see this field service to a close. I am going to sail away from this place with the ship, seeing a whole outreach start to finish. It feels exactly right, but it’s not without a price. I will miss things at home. I have missed weddings, engagements, relationships starting and stopping, birthdays, everyday happenings and holidays. This decision means that I will continue to miss both small and big life moments. I will miss the birth of a very special little guy--Jonah Edward. I will miss concerts, camping trips, meals with friends, and the start of my very favorite activity of summer: Our Mission St. Louis summer sports camp/block party. I am missing out on sharing daily life with important people who mean the world to me. But I have to put all those cups of coffee, craft nights, and dinner dates on hold for a few more months, because even with all of that laid out in front of me, I still know that God is calling me to stay. I need to finish what I have started here, I need to finish out this season of my life. This part of me aching to serve His people here, that is pulling me to breathe in every single minute of the dirty Guinea air and that is overflowing my heart with joy. As hard as it is to say, and as selfish as it somehow feels. I have to do this for me. I have to trust that he is providing love and companionship to people at home, and that this is my time to fly. This is my time to figure out who I am and how I fit in this world. Figure out what makes me tick, what makes me, me. As crazy as it feels, this place truly is the perfect fit for me. I would do this job every day for the rest of my life and love every single second of it. The idea of going home to find a job that is simply mediocre in comparison is depressing, but how can I possibly recreate this at home where we have so much? Where we expect our medical care to be taken care of and consider it a right. Where we always have clean water, have eradicated malaria and cholera, have both the education and ability to carry out a healthcare system. My next step in this world, and the answer to these questions I don’t know, but what I do know is that I have until June to figure them out. Because of the love and support I have been shown by my family and friends who have chosen to support me, I’m not coming home--but staying to continue serving in my new home, the place I get to change lives every day, the place where my heart just fits.....

Here are the numbers of our service up here in Guinea since screening day: 

Mercy Vision

Cataract Surgeries 743

Pterygium Surgeries 45

Eye Evaluations 11,496

Distribution of Glasses 1,242 (UV, reading, or prescription glasses)

Routine Eye Exams 508

Outlook of Hope

Maxillofacial Surgeries 241

Cleft Repair Surgeries 88

Reconstructing Hope

Plastic Reconstructive Surgeries 18

VVF/RVF  40

Specialized Surgical Solutions

General Surgeries  127

Orthopedics

Orthopedic Surgeries 116

Ponseti Clubfoot Corrections 51

Palliative Care

Provide Home-care for Terminally Ill 22

Guinea Smiles

Dental Care - tooth decay infection removal 50,546

Clinical Dental Hygiene Services 418

Hospital Chaplaincy

One on One Counseling Sessions 2,061

Bibles Distributed 88

One on One HIV Counseling Sessions 315

Mercy Ministries

Partner Ministry Site Visits 148

Crew Participation Opportunities 1,209

Just take a minute to read those numbers again, and think about a face to match each one...To those of us with the privilege of being here they aren’t numbers, but people who we have come to know and love, people who have had a part of their life changed. 

Thank you for your constant support and love........

He provides......

This past weekend I began night shifts. Heading in to a stretch of four, I was honestly feeling tired but ready to get them over with. The previous week was an exhausting one on the wards with 2 ICU patients, several crew admissions for IV fluids, and the usual ridiculous awesomeness that is working in the MaxFax ward of a hospital ship...It’s funny having come from working full time nights for 2 years that I would dislike night shifts so much. I guess once you get your body back on a normal person schedule, it gets stingy for normalcy and the switch back to the nocturnal life is just that much more difficult. As it was, I headed into night 4 knowing that we had one of our VVF ladies in the ICU. I came into the shift with my running shoes and thinking cap on, just in case. This shift started off great, just one other nurse and myself for our 10 patients. About 2am my friend Beth stopped by, just to chat--she said she was laying in her bed unable to sleep and felt like she really needed to come say hi. (She returned to the ship on the 19th, after spending about 5 weeks at home over Christmas.) We hadn’t had a proper deep stuff catch up conversation, so we spent a few minutes chatting about life. I was also asking her opinion on a sick kiddo that we have (because she is one of the most brilliant nurses I know) when all of a sudden the nurse who was on shift with me starts vomiting, everywhere. I knew that I couldn’t ask her in between her retches to stay to finish out her shift, she was miserable, but I really didn’t know what the answer was. I paged in to the on call supervisor to find out what we should do, because as much as I wanted to and would be wiling to try to, I knew that I couldn’t take care of a legit ICU patient and 9 other patients. That’s when it happened, Beth-with a smile on her face said, “I’ll just go change and be right back”. I couldn’t believe it--I asked on a scale of 0-10 how serious are you right now? “A 10, I promise!” she replied. This girl came down to talk to me about life, and ended up pulling an all night shift on no sleep and jet lag, just to help out a friend. She saved me that night, and without her I might have just sat down on the floor and cried like a big ole overwhelmed baby. The next morning as we headed into our cabin to sleep for a few hours our friends asked us how our night was, and that’s when my bunkmate and bestie Jen said--”I woke up at 3 am feeling like I needed to come check on you and it took all I had to stay in the bed.” So there it is, once again, God provides. He put me on the peoples hearts in the necessary proximity to make sure I made it through the night caring for HIS children. He didn’t leave me high and dry, but thoroughly cared for. He has constantly and blatantly taken care of me not just over these last few months but my whole life, even when I wasn’t aware of him, when he honestly wasn’t a fleeting thought on my brain, or I wasn’t even keeping him on the fringe of my daily comings and goings. He has always been there there, and will always be there-orchestrating my life, and caring for me, even at 230 am........