The rooster sounds off to alarm me that the day is supposed to begin, but I’m already awake. My precious daughter of 13 years has suffered all night. She struggles to catch enough air when lying down. Placing a couple of tef bags under her thin mattress sitting on our cold dirt floor helps a little. The goats and sheep just a few feet away are also awake, staring at her with worry, just as I am. They’re dumb animals, but they understand suffering.
This has been going on for 8 years. Have we not been good to God? Why is Satan decided to make us suffer? This started as just some tongue swelling years ago. She was a happy 4 year old. Jumping up and down. Smiling. We thought she was being punished for something we did. The local healers told us not to worry, “it will regress.” When it didn’t, we bathed in Holy water, even took some home to drink daily. We gathered holy dirt and applied it to her swellings as often as we could gather it from around the church. Even the medical doctors told us there was nothing we could do after antibiotics failed to resolve the problem. Years of potions, skin burning and promises. But it just kept going. As it started to take over her neck and entire mouth, smiles were replaced with emotionless drooling and sad eyes.
We eventually gathered enough money to travel to Shire. Even there the doctors told us there was nothing we could do. Perhaps, they told us, we should travel to the capital to see if there was some special technology to reverse this curse. “Addis was too far away and we don’t have the money to travel there,” I told them. Another shoulder shrug is prescribed and back home we went.
But now shes dying. In front of my eyes. I have to do something. The rest of my children have already passed, God bless their souls, I can’t let this one go too. God is showing me what to do.
I grab my goats and sheep and march them the 5 kilometers to my nearest neighbor. “My daughter is dying and I need to go to Mekelle, maybe they can do something to help. Buy my cattle from me so I can afford to travel.”
Ok, this should be enough. Money in hand, I return to my daughter. Shes up, trying to find food. She hasn’t eaten in 2 days and must be so hungry. She will need strength for this trip, so I make up some Gunfo. We normally give this to postpartum women to generate strength for them and their babies. This should work for my daughter. Using her fingers, shes able to maneuver the paste around the mass that has taken over her entire mouth. Its slow, but shes able to get enough down.
The sun is almost in the middle of the sky now. If we leave now, we should be able to reach the town by sunset. So off we went, only with the clothes on our backs and a plastic bag of injera. 8 hours of walking through highland desert with sandals is easy, but how will we convince someone in town to give us a ride to Mekelle? We spend the night outside a local buna house in town, I will need this in the morning to keep going.
We were up before the sun. Eager to take advantage of the first buna of the day. I overhear the gentleman next to us talking about taking his bus to Mekelle today. I pleaded with him about my daughter’s plight. He did offer us seats in his van, but with no discount. The full price. I wasn’t sure if there would be another opportunity and it was a 10 hour drive to Mekelle, so I reluctantly paid the man in full.
When we were dropped off at the edge of Mekelle, she was looking weak, pale, breathing hard. We needed to find the hospital quickly. The locals tell me its 10 kilometers away; that’s nothing! I load my 13 year old daughter onto my back and set out to find this hospital. When I do so, I think to myself, “thank god she has the weight of an 8 year old from starvation, at least I can make this walk with her on my back.”
To hide from the stares of strangers, I’ve wrapped her face and mouth with a scarf. When we arrive to the hospital, I can’t believe how big it is. Theres even an electronic sign on the gate that flashes in English writing. I don’t know what it says, but I’m sure its amazing and intelligent. The best doctors in all of Tigray are in here. I’m in the right place.
When I make my way into the emergency ward, fear grips over me. There are hundreds of people. Piled all over each other. In every corner. Some aren’t even breathing, flies crawling all over their face without regard. Will anyone pay attention to me? Maybe this was a terrible idea. Will she die in this dark, blood-stained hallway? I should have just stayed at home and let her die on our soil. Like her brother and sisters. Maybe I still have time to make it home.
I didn’t realize, but in the middle of my thought process, one of the ladies in a blue outfit was taking off the scarf around my daughter’s head. I could see the look of horror on the lady’s face. I’ve seen it hundreds of times over the year, so had my daughter. She was used to it. She didn’t cry anymore. She knew there wasn’t any reason to.
She placed this plastic thing around her stick-like arm. It was attached to some buzzing machine. After a while, it displayed numbers. Similarly with something placed on her finger. This is why I came here. This is what will cure my daughter. I am in the right place.
She directs us to the back of the hallway and into a room full of very sick children. Some with plastic tubes around their face attached to bubbling water linked to a huge metallic cylinder. All of these children were being cured. This is where my daughter will be cured too. When she was given the same plastic tube around her nose, I praised god and thanked him for this cure.
The same nurse from before came in to ask me for payment. It was all the Birr I had left, but I was happy to pay. I have no idea how we will get home, but I don’t care. She was going to be ok!
Over the next couple of hours, she was more awake and had more energy, she was becoming alive. Doctors would come and go. Staring at her like you do a mangled corpse in the bush, recently attacked by hyenas. You can’t help but stare, marveling on how nature can be manipulated in such a way. I didn’t care. Nothing could bother me.
A bit later a group of white-coated habesha physicians came in with a ferengi. I had never seen a white person this close before. They look so young, their hair messy, faces unshaved.
They were encircling us. Although the habesha doctors were speaking in English, I could tell they were talking about my daughter. Is that ferengi doctor here for us? He was! I knew god was showing me the right path. For sure she will be cured. While they were talking, I asked one of the other doctors why the ferengi was here, she was already getting better. “Koi,” he said. Wait.
The ferengi had a concerned expression on his face as he looked over my daughter. After doing so, he barked commands and we were taken into another room full of magnificent machines. The ferengi stood in the corner, silent, arms crossed as the habesha doctor applied a blue gel to her neck. Then a white piece of plastic made a black and white image on the screen next to them. So THIS was the cure. Amazing. She didn’t seem to be in any pain. I glanced back over to the ferengi. Still concerned. Is this what they all looked like at baseline? A resting face of malcontent?
Then, they took a small plastic snake and placed it into her nose. This made her uncomfortable as another color image popped up on yet another screen. They all talked for a long time in English in front of us. Back and forth. A debate of some sort. The ferengi started drawing pictures, explaining things to the habesha doctors. He was clearly a teacher.
What they would explain to me next would change our lives forever.
They explained to me that my daughter had a tumor, that they didn’t know what kind, that it was taking over her airway and killing her. If they didn’t act immediately, she would slowly stop breathing and die. They explained that the needed to place a hole in her neck and to place a piece of plastic so they could blow air through it to help her breathe. And that a piece of the tumor would be taken for people to look at to figure out what it is.
And then after all of that she would either need special medicine here in the hospital or the tumor would need to be taken out with more surgery.
I pleaded with them that the plastic tube in her nose was fixing her. And what about all the things they just did. Wasn’t that enough? No, it wasn’t. I couldn’t react. Although she couldn’t speak, she was scared. I asked to leave the room.
I went around the corner so no one could see me and I wept. This isn’t fair! Why is this happening to us?!
I dried my face and gathered composure. When I entered back into the room, the ferengi was on his knee talking to my daughter, with Tigrinya words! His accent was terrible, but I could understand a few of the words he was saying. He had a smile on his face. He pulled a colorful picture out of his pocket and stuck it to the hand of my daughter. She looked down at it and held out her hand. Her lips tightened around the tumor and her eyes narrowed. She was smiling!
“OK,” I said. Lets proceed. You are the doctors and I trust what you are saying. If this is the only way she can live, then it’s the only way. But, I don’t have any more money, I spent the last of it in the emergency department. The ferengi turns to me and says “cheggar yello,” don’t worry. The habesha doctors explain that they will pay for everything.
An hour later I was kissing my daughter goodbye as they carried her into the dark hallway to operate. I knew I may never again see her alive, but this is the right choice. This is why God lead me here today.
A couple hours later she returns to me, sleeping, but breathing comfortably through a plastic tube in her neck. She seemed fine. They placed us into a room with constantly beeping machines and children asleep with tubes in their mouths. The nurses tended to my daughter’s new plastic tube, cleaning it when it sounded wet or she was coughing. They did this for the other children around, too. I sat in a plastic chair next to my daughter in this loud room. I became friends with the parent next to me whose child had something called tetanus and needed a breathing tube just like my daughter’s. He taught me how to clean it by hand and with the suctioning machine. He was very knowledgeable and I was grateful he was next to me.
Those first few nights, it was difficult for me to sleep. The electronic sounds are so foreign, they were startling, but I remember one morning waking up in that plastic chair to see two empty beds in front of me, stripped of their sheets, their monitors silenced. This place started to scare me and I, for the first time, wanted to go home.
It was just then that the ferengi arrived with his army of habesha following him. They explained it was a benign tumor. A neurofibroma. That the dots all over her skin and in her armpits were all signs of a disease she was born with. Neurofibromatosis type 1. I had no idea what any of this meant, but they continued to explain that the only way to make this tumor decrease in size was surgery. There was no cure, but they could slow it down, give her some of her life back.
I could tell that they wanted nothing other than to help us. It wasn’t about money, I had none. I trusted this team. I wouldn’t be staring at an empty, silent, plastic bed, that wouldn’t be me.
They explained that they would attack it in two parts. First the mouth and then the neck, separated by 3 weeks. I didn’t want to hear anymore, I already said yes, so I told them to go. To stop scaring me with the details.
When she returned hours later. I didn’t even recognize her. I thought they brought me the wrong child. Still sleeping, breathing slowly through her plastic tube, she looked like that 4 year old I once knew. She had a face, one that wasn’t accentuated by the massive tumor trying to climb out from her mouth. The feeding tube that was placed in her nose after the first procedure was still there, but I now had a mouth to feed. The next morning I pleaded for them to let us feed her. “No,” the ferengi said by shaking his head. She had to wait a week for things to heal.
As the weeks went on and we were allowed to feed, the turnover of children coming to going in this room was no longer the focus of my attention. Even the loud machine sounds were ignored with the sole goal of getting my baby home. By two weeks she was a completely new child. Bouncing around, talking for the first time in years, albeit with a muffled voice. Apart from the occasional drool, she wasn’t embarrassed to be seen by others. She interacted with anyone she could find. She even took pictures with a ferengi nurse that was here for a short period of time. My daughter loved this nurse and always put on the biggest smile when she entered the room.
Even when her long hair became infested with lice, she laughed as it was all shaved off. She loved her redefining look. One day the ferengi came in, well actually we learned his name to be Daktar Jash, and showed her video of her new tongue with his phone. She was in awe as she made it dance between her teeth, reflected in the video before her. He was a goofy doctor. Always making odd faces to my daughter, giving her stickers and making her laugh. I thought this was odd behavior for a physician, but she loved it so I didn’t care.
At the 3 week mark, as promised, Daktar Jash and his team took her back to surgery to remove the part in her neck. Although she returned with a new tube coming from the neck, she was mystifying. A normal girl. I cried as Daktar Jash held my hand.
My New Family
Don’t get me wrong. I’m grateful for this Mekelle team. Clearly what they have done for us will change our lives forever, but my patience for him, his team and this hospital was wearing thin over the 2 months to follow.
He explained again to me that this wasn’t a cure. But a temporary fix to give her her life back. Its very likely that is will grow back. Its very likely that she will need surgery again. Its even likely that this will never go away during her lifetime. I came to terms with all of this, so why keep us here? Its time to leave. Time to restart life. Our crops are unattended and I’ll miss my opportunity to make money for this entire year.
But she wouldn’t feed herself by mouth. Whatever we put in, she would spit back out. She told me she was happy to feed through the tube. So why feed by mouth. She couldn’t taste much anyways.
By 2 months in, we had been moved to a small room without any machines. The windows opened and the breeze was nice. We shared it with a rotating cast of other patients Daktar Jash had operated on. Many others had tubes like my daughter. Some didn’t have eyes, or parts of their face. Some had tubes in their neck like my daughter. All came and went while we stayed.
One morning, Daktar Jash ordered the team to take out her feeding tube. I pleaded with them. They responded that she has to eat, you can’t go home with the tube. “Why not?” I thought. I knew what I was doing, but I couldn’t stop them. For the next 72 hours she would lay there, ravaged by hunger, unwilling to eat without the tube.
The sister of the guy in the bed next to us was special. She could speak to Daktar Jash in English and he would listen and smile with her. Her brother had his voice box removed for a tumor and had a permanent hole in his neck, they told me. He too used a tube to feed. The sister took a liking to my daughter. She would sit with her every day, read her books and convince her to eat. She missed her mother and this was an excellent substitute. I’d leave them together for hours.
One day she even brought my daughter new clothes and a new dress. Eventually, they replaced the feeding tube, unsatisfied with the results. Another month passed where every day I pleaded with them to let us go. Everything was fine. We didn’t want to be here. And then one day, she started eating. I raced around to find one of the team to show them. They were pleased but told me Daktar Jash had gone back to the United States for a couple of weeks. “Tell him to let us go!”
3 days later, we were released with a handful of Birr to get home. I told them I would come back when Daktar Jash returned, but I knew I wasn’t going to. I knew that she was cured and that God along with our faith in him will make sure everything will be OK. Bitami Yakenelleh, Chao.
This is a story told from the perspective of one of our patient’s fathers. Although the patient and her case are real, I have no idea what the father was actually thinking during all of this. This is just my rationalization of how countless of our patients present to us with such late-stage disease. There are 100 million people in Ethiopia and the vast majority live poor, rural lives. The countless barriers that prevent them from seeking appropriate care have paralyzed our team on too many occasions. This is where real global medicine is needed. To short circuit the rationalization of disease in rural Ethiopia. To minimize barriers to obtaining appropriate medical care. To even spread the knowledge that there is care to be had.
The medical side of this case is the 3rd patient of my next post in two days. We were lucky to achieve what we did, but this is just the beginning of her story. She will need many more surgeries in her lifetime; I just hope the father brings her to us before its too late.