Daniel

It all began through a window. A small, square window. Looking through from the bright hospital corridor, dim light came through from the room behind. If you were with me and saw what I saw, you’d have made out a cot. Angular and clinical – not a thing for a child. As your eyes begin to adjust, you can begin to see more of the room. A bed, lower on the floor, with a bigger figure sitting on it. I’d turn to look at you, to share a feeling of trepidation. And then I knock on the door.

The patient’s name was Daniel. I’d first met Daniel, a 14 month old boy with bronchiolitis, during a ward round on the paediatric ward of a busy East London hospital. It was early winter, and the ward was a cacophony of different coughs. As 4^th year medical students, we were trying to commit to memory the different sounds and the illnesses they signified, like eager birdwatchers recording new species.

“The thing is with Daniel though”, the doctors said in hushed tones before we entered his room, was that he had Down’s syndrome and was awaiting major heart surgery to correct the atrial and ventricular septal defects that would otherwise kill him.

I didn’t have time to process all this information, and what it meant, before we entered the room, in a bustling flourish. As a medical student, my clinical years had become an exercise in expanding the 2-dimensional descriptions of diseases and their presentations in textbooks into 3-dimensions. I was about to experience the patient who has taught me the importance of this the most.

Daniel was lying listlessly in the cot. Nasal prongs gave him the air his congested lungs were desperately trying to process. Like a good medical student, I noticed the signs of respiratory distress that I knew I could be asked about, as his little chest heaved under the work of breathing.

Beginning to settle into my surroundings, my eyes rested on Daniel’s face. Most noticeable was his dark storm of curly hair, a face that was unusual, but as my medical student brain was coming to terms with, didn’t look like the face of a child with Down’s. His mother was by his side. There were dark rings orbiting her tired, gentle, anxious eyes. As the doctors went through the barrage of questions their role demanded, I remember her calmness and the almost tangible bond between her and her son.

But as all this was going on, there was a part of me that was feeling a current rushing underneath this technical, professional exchange. There was something more that my intuition wanted me to learn from, a story that I did not yet know, but part of me wanted to be told.

When I returned later in the day to speak to Daniel’s mother Serafina, I had already begun to sketch a mental picture of their situation. As I peered in that window, I tried to empty my mind of any preconceptions before I greeted Serafina.

The room was hot, stuffy and cramped with equipment and belongings. I knew they’d both been there for days now. Daniel was starting to get better, and we discussed how he’d ended up in hospital. Serafina spoke with devotion about her son, and she transmitted her love for him with every description of him. With every minute that passed I understood more and more the bond between them. It was the two of them. They were in this together.

Serafina kept on talking, and I listened. I mentally put aside my plan to run through a formulaic medical clerking and we settled into each other’s company. Daniel lay in his mother’s arms being bottle fed. She described how Daniel was the youngest of her three children, how she juggled being a fulltime mother with all the hospital appointments that they’d been through together after the discovery of his heart defect. The eagerness of her speech let me know that she was grateful of the company. As the story of how Daniel had ended up in hospital this time around came to an end, my head was full of questions that I wanted to ask, but wasn’t sure how to broach.

Throughout our exchange, the descriptions of devotion, I could sense the ghost of the word ‘but’. That there was a difference between how she was admirably coping with the situation she found herself in, and the reality of how things may have been if she’d had a choice in the matter.

“So when did you find out that Daniel had Down’s syndrome?”, I asked. I remember her smile. It was wistful, as she fleetingly looked to the floor before getting up and shuffling wearily back over to the cot to put Daniel back to bed. Serafina explained to me how she had turned down the opportunity to be screened for Down’s syndrome during her pregnancy with Daniel. She told me that it had been offered by her family doctor, but she had declined: she had felt that it wasn’t necessary.

She vividly described the moment that the doctor took the consent form and tore it up, before tossing it in the bin. In hindsight, a trivial moment for the doctor had become charged with significance for Serafina, symbolic of a turning point in her life. That was the day, she said, that her life had changed.

There was a pause that suspended between the two of us as Serafina looked into the middle distance. I wasn’t quite sure whether she was lost in reverie or something less pleasant. As I waited for her to resume, I realized that I was entering a place of memories and emotions for Serafina that was delicate and still coalescing. I sensed that I had to tread carefully.

She started again, this time to tell me about when Daniel had been born. Serafina told me that she had felt something was different compared to her previous two births. She’d noticed that it had taken longer for her to be handed her baby after delivery than with her other two children. That there had been whispered conversations around her before, after the briefest of contact with Daniel, her husband and new child had been taken away to an adjoining ward.

I began to feel that loneliness, that claustrophobic closing-in sensation of something happening, but only to you. The loneliness of a situation that only you can understand. A moment where life disembarks from its supposed course and is shunted into the unknown. I could see her there: exhausted, people around her talking about her, but not to her. The sense of something happening, impending. But that has not fully taken form yet, not yet understood. The fear.

A moment in life that was supposed to be joyous had become a hinterland of uncertainty. An investigation would have to be made before any diagnosis could be considered. But that would take time, and what could anyone say to Serafina? It made me think of times in my life when, like Serafina, I’ve been in situations where I’ve experienced the insidiousness nature of uncertainty and how it burrows into your wellbeing. I thought to myself, as I would many times throughout our exchange, how could I have handled the situation better if I had been the doctor in that situation?

I reflect now, that this is the crux of medicine. As healthcare professionals, we have the privilege of being alongside people at the most momentous periods of their life. To be a guide, to assist and to explain the things not understood along the way. And, as was the case when Serafina talked to me, sometimes just to be company along the way.

She explained that she was eventually given Daniel to hold again. She said his hair was as wild and beautiful as it was when I met him. It was what she noticed first and what she noticed the most. “But, when I put him against my chest to feed, I knew. I just knew. Something was wrong.” I asked what. “Floppy, he was just floppy. I didn’t need anybody to tell me anything then, I already new there was something wrong with him”.

The medical student part of me acknowledged that hypotonia at birth was one of the cardinal signs of Down’s syndrome. But the rest of me was just thinking how terrified Serafina must have been to know that something was wrong with her child, but not understand what. She was eventually told by a consultant that Daniel was being investigated for some congenital abnormalities that might indicate a condition, and that it was likely this was Down’s syndrome.

At this point, she said, she started to notice other features. His eyes were almond shaped, with characteristic epicanthic skin folds. But she had eyes like this, she protested, and I agreed. His nose was flatter than normal too, as she began to intently study her newborn’s face.

With the lens of a potential medical diagnosis now fixed to her eye, she couldn’t help look at her beautiful new baby boy not as a proud mother, but as a clinician trying to decipher the code written into his body. It was the beginning of her struggle to reconcile the child she loved with the interpretation that he was in someway defective.

She remembers a nurse coming over to her as she held Daniel. Serafina was obviously worried. She turned to the nurse for some kind of understanding. The nurse had said “Are you God? Well, if you’re not, there’s nothing you can do” before squeezing her shoulder. She describes it as a moment of tenderness, words that meant something to her at a time that she needed comfort.

As I listened, my own silence was beginning to weigh on me. I knew the importance of allowing the patient time and space to speak, and that by not interrupting people will naturally offer all the information needed. And I had the time, I was happy to.

But as Serafina opened up to me more and more, I felt increasingly compelled to even the emotional status quo somehow. I felt the need to reassure, to comfort. But unlike the nurse she’d just mentioned, I didn’t have the words. I was frightened of talking for the sake of it. For something crass, or patronizing to tumble out of my mouth if I opened it.

I was imagining her position, but my powers of empathy seemed to barely touch the situation that she was describing. How could I offer anything to her that she had not already discovered for herself? So I endeavoured to keep on listening.

She told me how they had been left, finally, the two of them. Alone in a room to rest. She was worried, confused. Serafina smiled as she told me how Daniel had been sleeping, but as she looked at him, he opened his eyes. He had intently peered at her, and held her gaze.

She felt that he was telling her what she needed to hear: I’m fine, I need you: it’s us now. It was another moment that she was drawing on to help her make sense of what had happened. A narrative that stitched events together retrospectively, giving meaning and sense to what was unintelligible at the time. It seemed that this was part of her healing.

At various points as we spoke, she would digress from her story to tell me how much she loved her son, how special he was. How he had shown so much spirit. How the research she’d done had shown her that of all the genetic mutations that Down’s syndrome belongs to, that it was one of the few compatible with life. How special her son was.

I knew that she meant it. But her declarations of love were so emphatic that they almost sounded like protestations aimed at convincing me, or maybe even herself. I could see that she was wrestling with conflicting emotions: her love for Daniel and what that bond would mean for her future, too.

I could feel the story of her life coagulating and forming around us as she continued talking. In reflection, my own story, the way I make sense of things was beginning to become intertwined with Serafina’s. I began to use her experience to reflect more and more about my future role as a doctor and how to handle moments like she was describing.

There were times when she talked, and times when she would pause. I’d hold myself back from saying anything. I had begun to understand that these fallow moments had a latent power of their own. Serafina would form an image in her head, something would take shape that pierced her consciousness. And then she would tell me. There is one, in particular, that I now too will always remember. “I look now sometimes at a picture of me on my wedding day. I look so happy”, she said “And I think ‘You don’t know anything’, everything is not how you think it is”.

I realized that my eyebrows must have raised. She looked at me expectantly. All I could do was ask her ”Why?

Serafina told me how she had realized that how she saw herself then, just a few years before, was completely different to herself now. The experience of having a baby with Down’s syndrome had made her question her own values, priorities and the way she saw the world. She had been confronted by her own prejudices through questioning the attitude of others towards Daniel. Where she had once been judgmental, she was now open-minded, where she had once been self-absorbed she was now selfless.

I asked about how she saw other people perceived Down’s syndrome. She felt that rather than being abnormal – diseased in some way – Daniel was just a variation of normal. He was meant to be here. She told me how vivacious he was, how much he had changed her life for the better. How he had made her grow, mentally and spiritually. How loved he was by his brother and sister, his father.

What Serafina was describing to me was the conflict of living with illness. Daniel would need support for the rest of his life, she knew this. When they were in hospital, Daniel became reduced to a constellation of signs and symptoms. His future became a treatment plan. But as far as his family was concerned, he was Daniel. The boy with the beautiful smile and indomitable spirit. Serafina had alluded to her hopes that he would go to University. She joked that the girls would love his hair.

I was reminded of what Susan Sontag had written, that we are all born with dual citizenship, members of “the kingdom of the well and the kingdom of the sick. Although we all prefer to only use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” [1]

For Serafina and Daniel, this duality lay between his condition, that in some ways restricted him, and his individuality. But there was also an internal conflict that I was sensing in Serafina. A reconciliation of the way she would have judged a child with Down’s syndrome before Daniel, and the way she felt about it now. How these things aren’t clear cut – Daniel’s condition, a negative in some ways had actually been an epiphany in Serafina’s own development.

Serafina recounted to me an encounter she’d had with Daniel when she’d presented to the Emergency department. A doctor had asked her if she’d undergone pre-natal testing for Down’s. When she’d said no, there had been a reaction from him. Subtle, but that she’d picked up on. Something in his response had let slip that he’d thought she’d made a mistake. This had hit her particularly strongly.

And, it hit me too. I could see how, in some minds, she’d made a mistake. Maybe Serafina even felt this herself at times. Myself, I don’t know what I would decide if I was ever presented with the dilemma of knowing that my unborn child had Down’s syndrome. There is no black and white in such a situation. There is no right answer.

As Serafina’s journey towards a wiser more enlightened self had illustrated, greyness rules in medicine. ‘Good’ and ‘bad’ are often hand in hand. To be able to navigate the greyness between these two poles seems to underlie a lot of decisions I will have to make in the future.

The emergency doctor had projected his own values onto another person’s life, and his reactions had belied this. I was viscerally being shown the importance of self-awareness: the discipline of knowing when preconceptions are entering your mind and how to put them to one side.

Throughout our exchange, I knew that language would betray any prejudice that was hiding in my mind. Just as Serafina had been forced into an epiphany of understanding, my own outlook and beliefs were now being scrutinized.

Working as a medical student in East London, my education has benefited from the kindness of patients who have taught me. Patients like Daniel teach me what it really means to have a condition. That Down’s may not look like it does in the textbooks. That some conditions will make you challenge one’s own notions of what it means to be on the other side of the illness/health divide. The power of pathologising a condition. And how deep the repercussions are for the person that is told that, from now on, their name will be qualified with a condition. A label that reducts them and diminishes their individuality. I digested my time with Daniel and Serafina as I left them to rest.

I was questioning my own role as a medical student. Was I just prying? Did Serafina really want me there? She was talking to me because I was there, but I wasn’t sure whether she was confiding in me, or venting to me how she felt about the established way of thinking. Which as a medical student I surely represented?

A medical student often inhabits a liminal space. Looking towards the kingdom of medicine and all its titled inhabitants, but no longer looked upon by others as a ‘layperson’. It can be a strange world. Often lonely, sometimes overwhelming as the two worlds exert their pull as you pass between two. Learning the custom and language of medicine, so that you can be accepted. But often wincing when you hear its strange tongue being spoken to an uncomprehending patient.

I was understanding my role, as a conduit between these two worlds. A diplomatic passport that allowed me to pass freely between the kingdoms of the well and the ill. Grasping this idea helped me shape my relationship with Daniel and Serafina. Inhabiting the grey area has its advantages. As this was becoming clear to me, these worlds were about to clash in a way that was going to challenge me even further.

Daniela and Serafina had never been far from my mind in the day that followed, before I again found myself outside that small window. This time, I was joined by fellow students and a consultant on a teaching round.

I stayed on the periphery as our teacher started asking Serafina questions about why Daniel had ended up in hospital. I found myself moving closer to Daniel as the exchange gathered pace, gently placing my hand on his chest, a gesture of reassurance for me as much as him. This time, looking in to this room felt different, I was observing rather than communicating. The questions were pointed rather than open. Our teacher was talking, but Serafina was quiet. I felt an air of anticipation in the room that was beginning to build into tension.

And then, we veered into the realm of Daniel’s condition. The doctor began pointing out what he called the ‘dysmorphic’ features that were associated with Down’s syndrome. As he pointed out Daniel’s flat nasal bridge, his single palmar crease, I began to feel more and more uncomfortable. To my shame, I tried not to look at Serafina. I didn’t need to look, I knew how this was making her feel.

As a group, we had entered as students under the veil of goodwill that comes with learning. But we were now acting like dispassionate scientists: analyzing Daniel and reducing him into a taxonomic list of features so that we could classify him.

To the defence of the doctor who was leading us, I have great respect for him. I found him to be a wonderful and caring doctor in every other exchange I encountered him in. I just don’t think that he was aware of how insensitive his approach was. He had spent so long in the domain of medicine, that he was able to lapse. Part of him had become immune to the effect that his words could have on others.

I can’t think of any other reason why he chose to conclude his examination with the words “But children with Down’s syndrome are very happy, we like them, they are cheery people”. Everything in his face and his body said that he meant this with kindness and paternal reassurance. But with those words, I could see Serafina’s composure begin to crumble.

We left, and there was little time to reflect before we entered the next room, and I had to examine a patient in front of the group. Later, when I met my colleagues for lunch, they told me they’d bumped into a crying Serafina in the corridor. She’d told them to never speak to a patient in the way that she’d just been subjected to. They said that she had cancelled the next day’s appointment with the heart surgeon who was to operate on Daniel.

I felt terrible. Guilty that I had stood by and watched as the scene had unfolded. Yes I was a medical student, there to learn and do as I was instructed. But I was also an individual. I felt I had betrayed myself by not speaking out against what I thought was wrong. I was ashamed of myself. I was ashamed that medicine had been used to legitimize a form of discrimination that had really hurt someone.

I excused myself from the table to go and find Serafina. I didn’t know what I was going to say, I didn’t even know if it was appropriate, but I felt a responsibility to speak to her.

I was aware that I had possibly become too involved emotionally in this case. I felt protective towards Daniel and Serafina. But as I rushed through the long corridors, I scanned myself, and I trusted that my response was appropriate. I resolved to myself that I was not there to make myself feel better about the situation, I “just wanted to make sure that Serafina was alright”.

Serafina talked, I listened. She told me how much she hated the word ‘dysmorphic’, how dehumanizing it was. She’d felt humiliated by the exchange that had just happened, but she was also angry. I could sense this anger was steeling her, pushing her further along in her journey, mettling her temperament. Although she’d been crying, I could see that she was bouncing back: this experience was feeding the resilience that had become her lifeline.

I wasn’t sure what to say, apart from to be honest. I tried to explain that my superior had been well-meaning, but agreed that his choice of language had been insensitive. It was difficult to navigate being honest with trying not to betray my teacher, who I did not want to overly-criticize.

The situation was making me acutely aware of how the profession I was entering would test me time and again in situations like this. How responsibilities to patients and to profession were concurrent, but could pull in different directions. That the knot of such contradiction would lie in my hands. It would ultimately be up to me to untie such conflicts in a way that was equitable.

I wanted to make things alright, but I knew that this was beyond my powers. As Serafina talked and Daniel smiled and gurgled, unwitting to the situation around him, all I could do was to keep them company through this moment. She reassured me that she had rearranged the appointment with the heart surgeon, and that she was simply looking forward to Daniel being discharged so that they could return home. To have a normal family life again, where Daniel was just Daniel, and not a patient. To be humanized again, is how it felt.

The one comment I dared to make, picking my words exquisitely carefully, was an observation on something Serafina had said to me the day before. I reminded her that Daniel was very much meant to be here, he had overcome much placed in his way, already. That somehow he had come through the genetic lottery, the screening process, and now this recent hospital admission. He was very much surviving, and he was obviously enjoying being here. I suggested, without trying to overly-reassure her, that this would stand him in good stead for the future and the impending operation. I thanked Serafina and Daniel for the great deal that I had learned from our time together.

I left them for the last time, in the room that I’d first encountered them when I looked in through that small window. Our encounter had changed the way I would see people with conditions like Daniel’s in a deeply felt way.

My mind was drawn back to something that had happened to me in my first week of medical school at Barts and the London, nearly four years before. As part of our induction process, we were allowed into the hallowed pathology museum at the top of our medical school building.

The sense of ceremony was heightened by the grand surroundings of ancient glass cabinets containing medical relics. There was an institutional smell of polish and decay, as we were led towards the tour’s climax. The most famous exhibit, and a figure who had become emblematic for the medical school, was the hunched skeleton of Joseph Merrick. The man who is remembered as ‘The Elephant Man’.

I remember standing there, studying his skeleton. He stands, naked, unable to object to the casual scrutiny of passers-by. His right side droops, as if it had been melted by some fierce heat. It gave him the impression of cowering. As if the weight of all the attention and the corrosion of all the sneering insults he must have endured had combined to physically deform him. The most poignant item on display was the pillbox shaped cap that he wore in public, to obscure his face in order to avoid the public gaze that was to become the source of his fame and survival, but also of great suffering.

I thought about how incongruous this was. That this man Joseph Merrick should still be known as ‘The Elephant Man’ by the institution which still homes him. That he should be defined by a name which caricatured his disfigurement. How discordant this was within the politically correct world in which his remains now inhabited. A time in which he would be understood as having a rare genetic overgrowth disorder, probably Proteus syndrome [2].

Instead his name has become shorthand for the ugly and strange, in a betrayal to the celebrated mind that once inhabited his famous body.

Joseph Merrick often quoted poetry at the end of his letters:

‘Tis true my form is something odd!

But blaming me is blaming God!

Could I create myself anew!

I would not fail in pleasing you.!

If I could reach from pole to pole!

Or grasp the ocean with a span!

I would be measured by the soul’!

My experience with Daniel had reminded me that the prejudices felt by Joseph Merrick over a century ago still reverberated today. That medicine can often be clumsy, cruel even. Defining individuals by their condition sacrifices their humanity. That the way we perceive others is in fact a reflection of ourselves, and that without a self-awareness to our approach, we can unwittingly hurt others.

I had been shown how powerful the words we choose to define others are, especially coming from the perceived position of authority that doctors often occupy. How they can empower someone, or oppress them.

In terms of communicating with patients, I had learned that communication has the ability to frame a way both doctor and patient views a condition, and that this perspective is a powerful therapeutic tool.

The principle of ‘narrative medicine’ had been demonstrated to me first hand. The idea that by listening to a patient, being empathic and attempting to inhabit their story is key. I had felt uncomfortable at times, giving myself to the story that was unfolding around me. But I did feel that I had helped Serafina in some way. By listening, I was helping construct a space in which she was making her own sense of things.

She was empowered to make her own narrative. To understand things in a way that allowed her to gain ownership over what was happening to her and Daniel. This principle of narrative medicine is something that my experience with Daniel has turned into an ethic. One that I will endeavour to uphold and keep at the forefront of my mind. When I am tired, busy, short of time as a junior doctor. To always try and find time to give a patient the opportunity to have someone to listen and engage with them.

My experience showed me how this principle not only benefits the patient, but also enriches the clinician, as they build their ‘empathy bank’. The accrual of this repository of experience helps a clinician to relate better to future patients.

And it also gives them a deeper understanding of pathology as they grasp a feeling of what it is actually like to have the condition that they explore. I feel that these experiences are especially powerful as guiding principles to be aware of for any medical student who wants to develop, and by doing so be enriched as an individual.

I had experienced what it was like to hold that passport to the ‘other’, to be one of the refugees that medicine seeks to repatriate to the land of wellbeing. I had felt how alienating it was to be marginalized by a condition, and how much harm this could cause. I vowed to always keep an understanding of this liminality within me. That an important part of being a good doctor is to not forget what it is like beyond medicine, what it is like to occupy the feelings that those who visit hospital inhabit.

And I had been cautioned that medicine is not separate to the world ‘outside’. It is here to sustain the world we live in. Although it can feel like rarified air at times, I must breathe deeply, and bring my feet back on the ground in order to relate to the patient in front of me. I understand that this will guide me through many challenging interpersonal exchanges.

Looking back as I write this, I am grateful for how this experience has made me grow as a person and as a clinician. Medicine is a mirror which forces you to examine yourself as you examine others. I will always try and keep this reflection in mind before I gaze though the next small window into another person’s life.

Names have been changed of all parties involved in this story and precautions taken to avoid any identifying features

• References

• 1 Sontag S. Illness as a metaphor. New York: Review of Books; 1978
• 2 Sitton J. Measured by the soul. London: Lulu Press; 2012