I have been putting this post off for the longest time, mainly because I couldn’t process the heartache. I don’t have the emotional capacity to feel this amount of sadness and still function in totality, and you will see why. Over the years, I’ve dealt with numerous deaths of patients, of people; some I’ve written about and some I haven’t. This was different in every way. I don’t know how and I don’t know why, but it just was. The main reason I wrote this post is because I made a promise to a friend, and I had to keep it.
I don’t go to work to sit behind a desk and push paperwork. I don’t deal with fictional deadlines and money-making deals. I don’t work in an airconditioned 70m2 room with a debonairs pamphlet on the fridge and freshly brewed coffee on the kitchen counter. I don’t wake up refreshed after dreamless nights. I don’t have the peace of mind you do.
I do go to work but I certainly don’t have a 9 to 5 job. The life-consuming lifestyle of medicine doesn’t allow you to leave your ‘work’ at ‘work’. At what point do I equate ‘work’ with ‘lives’?. I stand in the shower wondering if the baby on the ventilator is still alive. I drink my coffee in the morning hoping the baby who had 10 seizures yesterday has recovered. I nervously drive to work cringing the thought of all the sick babies who will come in today, some will live. Some will die. I walk up the stairs thinking about the 4 death summaries I must write, hoping I wont add more to the list today. I scan the line of patients outside looking for signs of sick babies, hoping to find none. I silently walk to the morning meeting hoping theatre wont call us to resuscitate a 3.1kg term baby who wont cry because there’s a meconium plug stuck in her trachea.
I remember the Tuesday I saw her for the first time during handover rounds. I really don’t care about sounding cliché, she was special from the moment I saw her. Her head tilted to the right, resting on her boney shoulder. Her wise eyes fixed on the outside world as if she somehow knew she would never make it out again. Her wasted arms gently folded and resting on the massive, huge abdominal mass. I didn’t know if her frame was really that shrunken or the abdominal mass had disproportionally shrunken her just by its sheer size. What was she thinking so deeply about? Afterall, shes just 11 years old.
The overall impression was immediately that the mass was cancerous. We all knew it just by looking at it. As doctors, we have to make decisions and accept the reality of them. With that said, we are not built of concrete and hoping is never a bad thing. I always make it a point to hope. It fuels my effort to keep trying.
I stayed behind while the rest of the team moved on. I greeted her mother who was about my height, 1.54m. we acknowledged the height similarities with a smile. I probed about the obvious mass staring at us and the mom told me about how they noticed the mass growing for a month. Her feet began to swell up progressively. Another bad sign, anasarca.
Nonzuzo Cele looked at me, and said nothing. I smiled at her weakly.
I let Mrs Cele know we would be moving Nonzuzo to high care for close monitoring and to begin the battery of tests that needed to be done. She agreed without hesitation.
I left to continue my days work and met her in high care when I commenced my rounds. She watched me closely as I examined the neonate next to her. She smiled intermittently. I did too.
When I finally got to her, I introduced myself.
“I’m Dr Moosa, how are you?”
“I’m fine. Why do you splash your hands with creme soda?” she sounded amused, her hands still folded on the giant mass.
“Crème soda? You mean hibbertane?” I burst out laughing as I handed her the alcohol-based cleaning solution.
We both laughed.
While examining her, she asked me close to a million questions. Her curious 11 year old mind always inquisitive. Her clever intuition always prying.
“Why does a stethoscope have 2 sides?”
“Why does the drip have 2 connections?”
“Why do you wear orange takkies?”
“Who owns the hospital?”
“How do you spell Paediatrician?”
“Why does Dr Nair wear keys around her neck?”
I couldn’t keep up with her hilarious questions that had me in stitches for the most part. Over the next few days, I subjected her to needles, poking and prodding that would make any adult cry. I had to draw bloods from her multiple times, she never flinched. She stared at the needle as it penetrated her skin, holding the cotton wool in anticipation to plug the hole. During the lumbar puncture, she gritted her teeth but said nothing. While aspirating fluid from her right pleural space, she stared at me tight-lipped. The tests had come back suggesting a malignancy, but I still had hope.
We developed a ritual of poking then colouring. She whipped out her colouring book and announced we would be colouring Minnie mouse today. I removed my gloves and washed my hands, getting ready to colour. I asked her if she wanted panado for the pain, she politely declined. She asked me if I drank 8 glasses of water because her teacher Mrs Ngcobo said its important. I grabbed my water bottle and we began to colour in silence.
“Nonzuzo, you ask me questions every day. I have a question for you today.”
“You can ask me anything Moosa.” She smirked with her nose in the air and her signature arm-folding posture, colouring pen at hand.
I laughed out loud at her cheekiness.
“Why are you so brave, Nonzuzo?”
She loosened up and her gaze fell. She thought for a second and looked me in the eye.
“Um, well I am brave because I have to be strong for my mother.” She said matter-of-factly.
I didn’t expect that. I felt my lacrimal glands go wild with tear production, I immediately swallowed the tears.
I didn’t have any words. I consciously tightened every muscle in my being to keep still, I clenched my fist and firmly felt my calf muscles stiffen. I fought every urge to hug her with every fibre in my being, in the name of professionalism. I left the room, feeling like my heart had fell through the floor.
Over the next few days, Nonzuzo’s condition had worsened. The fluid that was in her feet had made its way to her lungs. Her breathing was labored, the pain was overwhelming. She hardly said a word. She stared out the window and asked no questions, a bad sign.
It was during a rainy Wednesday night call that I made my way to check on Nonzuzo Cele, hoping to find her colouring or questioning. She was quiet. I leaned close to her and asked her how she was doing. She braved a small smile that didn’t make her eyes tighten. Mrs Cele stopped me on my way out.
“Can we take Nonzuzo home to die? I don’t her want her to die without her siblings around her”.
My facial muscles felt paralyzed, for which I am grateful. I didn’t want it to match my feelings and morphe into a hideous ugly crying face. I somehow managed to choke that I would discuss with the consultant. She placed her hand on my shoulder with a sad smile. I ran.
I felt a myriad of emotions, some I haven’t felt before. I felt completely unprofessional and crippled by my emotions. Why am I getting so attached? Why am I unable to do my job? Why cant I go back and counsel the family like I should have. This is my job, I am supposed to be able to ‘break bad news’. I am expected to tell parents that their children are gong to die with a straight face and then move on swiftly to the next one. Im supposed to be able to ‘factory-reset’ my feelings at the blink of an eye. I felt guilty for focusing on the fact that Nonzuzo will die eventually, something I could not bring myself to accept. I felt guilty about feeling guilty. Is medicine not about life and death? Why cant I feel my feelings in peace. Patients are human, and so am I. I value life above all else and that’s precisely why I dedicated my life to saving the lives of others. Am I not allowed to grieve the lives that are lost in front of my eyes?
After the sadness and guilt, came waves of anger. Anger at myself, at the system, at life, death and God. I read about the scum that were raping and murdering women and children, without abdominal masses. Why must a beautiful, amazing, inquisitive and lovely 11 year old with quirks and a million different questions die? Where is the justice in that?
I was numb and mechanical for a while, I tried to regain my ‘professionalism’ again.
“Nonzuzo Is vomiting blood, doctor”. I rushed to the other side of the ward, I checked her vitals and ordered some medication. She opened her eyes and smiled. “Hi Moosa, I think my time is almost finished”. The medication isn’t working. I don’t feel pain but it’s getting worse, she pointed to her abdomen.
I wiped the blood stained secretions from the corners of her mouth. I held her hand and sat next to her for a while in silence.
“Don’t say that brave girl. Hold on, okay?. Im here” my voice broke.
She signaled me to open her colouring book. I removed the small piece of history and progress paper and read it. I smiled. Yes you are a Brave girl. We fist bumped.
I always think of myself as a shepard to families during these hard times. Leading them through a path they shouldn’t know about, yet a path I have walked through so many times before. A person with answers to an unanswerable situation. A person who offers some kind of explanation to give them an ounce of peace of mind.
In this situation, Nonzuzo did that for me. The dying comforted the living, in some twisted way.
“Promise me you wont forget me?” she said.
I held the paper up, “Never. Im going to keep this forever”.
“What if my mother and father and brother and sister and teacher and Nkosi and his dog, forget me?” she questioned.
I almost laughed.
“No one can forget you. You are unforgettable and brave. Ill tell your story, I promise”.
“what will you tell?” she questioned again (lol).
“about how brave you are, ofcourse”.
She seemed satisfied as no questions followed. She closed her eyes and mumbled she was tired. I covered her with the duvet and walked away, feeling an odd sense of peace.
She died the next day.
*Nonzuzo Cele is her real name. I promised a young lady I would tell her story and I did. Permission was granted by her mother.