patient stories

Toyi went to the HOPE Centre today. He'll come back Friday to have the sutures taken out of his scalp and soon enough he and his sister will be making their way back north to their village. Over the next few months the scars on his head and cheek will soften and smooth out until they'll be hardly visible anymore.



That's Toyi when we first met him, his eyes full of fear and suspicion and the combined weight of a lifetime of ridicule. His brows were perpetually drawn, unsure of whether we really meant it or not when we said we'd take care of him.



That's Toyi today, standing proudly next to his friend Papakey. When I came over to their corner and told them I wanted a photo of them for Dr. Gary, I figured I'd just snap one of them sitting on their respective beds. Instead, they both got up and solemnly arranged themselves in front of the linen cart. When I raised the camera, these two men who came to us without noses broke into smiles (Toyi's, admittedly the smaller of the two, although I'll take what I can get from him) and stood tall for their photo op.



Behind me sat Toyi's sister, beaming her thanks and shaking hands with anyone who came near. They sat together on his bed for one last photo and then Toyi walked out, taking the family nose with him.

Today was a good day.

And as if that weren't good enough, little Sibi came into one of the empty beds a few hours later, back for a minor follow-up procedure after her cleft lip repair a few weeks ago.



I love old man Toyi, but I have to be honest and admit that I'm not the least bit sorry that only four of the beds in D Ward are now occupied by patients over ten years of age.

Today during rounds we removed the bandage around Toyi's head, and I got to be there for something that has to be one of the absolute best parts of this job. I took his mirror out of its wrapping and handed it to him so that he could take his first, long look at the finished product. He stared solemnly into the glass, turning his head from side to side, inspecting the newly-minted smoothness of his scalp, peering at his nose. We stood silent in a circle around him, Papakey watching anxiously from the next bed, waiting for his response. After a long pause, Toyi, in his typical old-man style, nodded once and uttered the only words I've ever heard him speak in French.

Ça va

Thirty days of waiting on the wards and the sixty years before that distilled into two small words. It's okay. His sister burst into happy laughter, Papakey nodded his own agreement and we moved on to the next patient. Behind us, in his quiet corner, Toyi picked up his mirror again and stared in wonder at his reflection until his nurse came to clean the suture lines and replace the bandage.

Dr. Gary summed it up perfectly, his grin wide. That corner is worth the price of admission these days.

I feel like a broken record, going on and on about how much I love this place and how much I love my job. But, oh, what a tune to be stuck on.

Ça va

I stopped by D Ward yesterday evening to check on a post-operative patient and was greeted by the sight I've been waiting twenty-nine days for. Toyi sat proudly on his bed in the corner, having been to the operating room to have the final touches put on his new nose. The flap of skin that has been providing a blood supply for the nose was carefully moved back up and stitched into place on top of his head, and only the clean, white bandage showed that anything had been wrong in the first place.

I caught his eye, grinned and threw up my hands in fake astonishment. Toyi ducked his head, a shy smile on his face, and then straightened up to give me a good look at the reason for all the fuss. Sixty-some years with a hole in the middle of his face, and there he sat, his nose looking for all the world like his sister's. The family nose after all this time.

To celebrate, he produced a papaya from somewhere under his bed. I ran upstairs for a knife and one of the other nurses found a tray to serve as a cutting board. He carefully sliced through the fruit, sharing pieces with Papkey, his twin in the next bed who's waiting for Tuesday to have his second surgery, and with little Alex, a three year-old who just had a tumor removed from the place where his right eye used to be.

I watched the scene unfold in front of me until my attention was stolen by the baby gurgling in a nurse's lap next to me. I knelt in front of her and was greeted with the heart-melting split smiles of a little one with a cleft lip. She's maybe the fattest cleft lip baby I have ever seen, and it's obvious that her mama dotes on her, from her little twists of hair held together with multicoloured elastics to the innumerable rolls in her chunky legs.



Her name is Beauty, a name usually reserved for the perfect ones over here, the ones who come out with smooth, unbroken lips. But when she was born, Beauty's mama saw her for what she was and spoke life over her right from the start.

Tonight Beauty sleeps curled up in her big bed, the steri strips across her top lip the only indication that anything was ever wrong. Across the room, Toyi is snoring through his new nose, and all is right with the world.

Two years ago, around this time, I met a woman named Abla. She had had a tumor removed several years earlier and the metal plate in her jaw had become infected and needed to be taken out. She came to the ship to be admitted for surgery when we discovered that she was pregnant. When we realized that she was still in the first trimester it became clear that anesthesia would be too great a risk to her unborn baby. When we told her that she would have to wait three months and have her surgery when she was further along in her pregnancy, her response was frantic.

I still remember the look in her eyes when she turned to me and told me that she was going to kill herself if she had to wait three months, that she would go out and have an abortion so that she could have the surgery right away. It took everything we had to convince her not to take her own life or her baby's life. I remember showing her the card with the new surgery date on it, explaining over and over that she would have surgery, but that we had to give the life inside her a chance to grow first. After hours of counseling, she agreed to wait. Three months later, her belly just starting to grow round, she had the surgery to remove the infected plate.

Yesterday evening I went down to the ward to get something I'd forgotten, and I recognized Abla lying in Bed Two. I glanced at the computer and saw that she needed another surgery on her jaw, and when she looked up and recognized me, I went over to say hello.

Curled up in the bed next to her was a beautiful eighteen month-old baby boy with huge brown eyes and a little button nose. She proudly introduced him as Etienne (the name means crown) and reached out to hug me when I showed her my own growing belly. I felt the familiar lump in my throat when I did the math, just to be sure, and realized that little Etienne was the baby we fought so hard for two years ago. He spent the afternoon on a translator's back while Abla went to surgery today, and every time I saw him I couldn't help but smile.

Sometimes we have to say no. Sometimes things are hard and there's no way to make it better. But sometimes, and these are the good times, the ones I want to write down so I can look back on them on the hard days, sometimes life wins.

I had just finished giving report to the evening charge nurse and was heading towards the office to do a little work before collapsing after a long day when Jane, one of the screening coordinators, stopped me in the hallway outside C Ward. Do you remember Komi, the cleft lip baby with neurological problems we did a CT scan on at the beginning of the outreach? His name didn't ring a bell, but when I stuck my head around the door to see him there with his mama, bundled in a little yellow blanket, I knew him right away.

I met Komi at Screening Day. His mama let me hold him while I went through her paperwork and made sure she understood when to come back to the admissions tent so he could have his scan. Looking at him that day, I had seen Wasti in my arms and I had known what the CT would show. (This is Mekenzie with him that day, taken by JJ Tiziou, one of the amazing ship photographers.)



Holoprosencephaly is a disorder in which a baby's developing brain fails to properly separate into two hemispheres. The most severe cases result in the death of the baby before birth, and babies with the least severe form are born with brains that are nearly normal. Komi falls somewhere in the middle of the spectrum, and as I took him in my arms again yesterday it was clear that his brain is not doing well. He and his mama had come back to the ship to see the dietician who runs the feeding program and then had been sent to Jane to see if it was possible to schedule him for a surgery to fix his cleft lip. Since Jane isn't a pediatric nurse, she asked me to speak with Komi's mama and so there I was, sitting in C Ward at the end of a long week, holding a damaged baby in my arms, somehow tasked with explaining to her that we wouldn't be able to do that surgery.

Maybe things have been going too well this year. Maybe the other team leaders have been shielding my newly fragile hormones from the worst of it, but yesterday felt like the first time in a long time that I had to have a conversation that was so wrenching, and it was brutal.

We sat together for the better part of an hour and as I questioned Komi's mama, trying to get a good picture of how his brain has been functioning, he laid in my lap, his muscles twitching in rigid spasms. At least twice he had full-blown seizures, his back arching until his head almost touched his bottom, and when this happened his mama nodded wearily, explaining that hardly a day went by without at least one. She told me how it's hard for him to eat because of the seizures, how his fevers are out of control, how she can't get his head to turn back to the middle for hours while his little body stiffens over and over.

When I told her that it was too dangerous for Komi to go under anesthesia for his lip to be repaired, she sat quietly for a moment and then thanked me. We talked about the local healthcare system and she told me there was a neurologist that she would try to see to ask about medications to slow the seizures. I told her she was a good mama, that she was caring for Komi so well, and she dropped her face into her hands and started to cry.

She lifted a tear-stained face to me and she put a hand on Komi's small body. This baby is my heart, she told me, and as he jerked and twitched against me I felt the answering thumps of my own baby, still safe inside me, pushing back, and it was all I could do not to break down in front of her. She told me how she had an ultrasound while she was pregnant, how they told her he would die and offered her an abortion if she could come up with the two hundred and forty dollars.

But he is my heart, and I would never do that. He has come through me for a reason, and I know that people will come to Jesus because of his life. I am trusting God for a miracle. I told her the story of what happened to me in Peru, about the healing and about the pain and I told her what God had taught me. That He is a God of miracles and that He is still that same God when we don't see one, and she received that word like water in the desert.

We sat together, two mamas in C Ward, me holding her baby and mine twisting and thumping inside me and we lifted praises to the God who does not leave us alone in the fire. And she thanked me again, tucked the copy of the CT scan report into her bag and walked out, head held high while I went to find a quiet corner and weep tears of joy and pain and fear.

Without a miracle, Komi's life will be short and hard. His mama will love him and care for him and proclaim her strong faith to anyone who will listen, and still he will suffer from constant seizures and the pain of contracted muscles. I don't know what to do with that knowledge. I don't know how to hold a damaged baby in my arms and feel my own child, with all the promise of perfection and all the potential for just as much damage, move against him. So many people told me that being a pediatric nurse is different, harder once you have your own children.

It feels selfish and small to even say this in the face of that mama's faith, but I didn't think it would be this hard.

Unfortunately, Toyi's surgery wasn't quite the success we'd hoped for today. Sometimes, even after waiting a long three weeks for a new nose to grow its own blood supply, the connections just haven't formed. This was the case for Toyi as they discovered in the operating room today. It's not a terribly uncommon occurrence, but it's an unfortunate one in his case since he was tired of waiting for this second surgery the day after his first one, and he's let us know it in no uncertain terms every day since then.

And so we wait. Again. In another week Toyi will head back into the OR for a second try; please pray that in this week of waiting a strong blood supply would be established to his new nose. He was still pretty sleepy when I left for the afternoon, but I can imagine that we're going to have a grumpy old man on our hands when he wakes up and realizes that he hasn't quite achieved the look we were hoping for.

Tomorrow is a big day on D Ward. After a long three weeks, Toyi is going to have his second surgery, the one where we'll replace the flap of skin that has been serving as a blood supply for his new nose. For three long weeks, Toyi has been enduring endless dressing changes almost every day. Some of those days were better than others, to be quite honest.

Right from the start, Toyi was a hard one to convince. He's an old man and has lived his whole life without a nose; such a drastic overnight change was something that was hard for him to come to terms with. Add that to the fact that he's been stuck in a bed on a windowless ward day in and day out and you have a real recipe for a potential disaster. At the very least it's a recipe for a potentially very grumpy old man.

He's been doing everything that we discourage our patients from doing. He's been touching his suture lines and scratching at his bandages and pulling them off long before they were ready to be removed. He's spilled food under the gauze covering the skin graft on his cheek and picked at the dressing on his leg until it fell off not once but five times in the ten days before it was due to be changed. He's stubbornly refused to shower, refused to change his gown, refused to take off the dirty pants that he was determined to wear. He's smacked nurses when they came near and grumbled to the man in the next bed that a month in this place is way too long.

And yet.

Toyi is healing. His wounds all look near-perfect, his head ready to receive the skin back on top of it tomorrow. The place on his leg that should be infected because of all the times the bandage fell off is perfectly healed. Despite his cheek actually getting infected, the entire graft stayed in place and is healing well. And it's not just his wounds.

At rounds this morning, when we reminded him that his last surgery would be tomorrow, Toyi's smile was wide. It's the first time in three weeks that I've seen him smile like that and it transformed him. Dr. Gary looked from Toyi to his sister (she's been staying to help translate and take care of him) and back to Toyi. We won't know until after the surgery, but I think I've done a good job. I think you will have the family nose.

For a man who has lived his entire life with a hole in the middle of his face, this is more than he could have imagined.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. (Ephesians 3:20-21)