Dr Marilyn MacDougall.

Phineas’ Friends – a photostory

For the first three weeks of his life, Phineas was a model baby, but on the Friday night of that third week something changed. By six o’clock in the morning his mother was sure that all was not as it should be. She took him to the local hospital A&E (Accident & Emergency department). Unknown to her, that particular A&E had recently gone to a twelve hour opening as a prelude to being closed altogether. As a consequence there was only an on-call GP. His verdict? “It’s just a virus, take him home. He’ll be fine.” Up to a point he was right.

Three hours later Phineas’ mother trusted her instincts and took him to another hospital to get a second opinion. He was admitted immediately.

phineas in intensive care at the Evelina Children's hospital
Phineas in the intensive care unit at ECH, May 2010. Photo: © Michael Cockerham 2010

What followed was a battle to save his life and diagnose the problem. By the Sunday afternoon his condition had deteriorated so much that he was retrieved to the Paediatric Intensive Care Unit (PICU) of the Evelina Children’s Hospital in Central London.

Phineas’ Friends is a photographic study of the doctors and nurses and clinicians that were involved in treating him during his six days at the Evelina. It is a study that forces the reader to challenge naturally held preconceptions about the size of modern medical teams, and indirectly asks the question: if all these people are necessary to a treat one baby with an infection, who in this new age of austerity can we afford to do without?

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Phineas is my third son. His mother, Laura, is my wife. Any parent who has ever asked a doctor if their child is going to die, and been met with a long pause and a non-committal answer, will have some idea of the emotions that were raging for us at that time. We were lucky. Although his condition was life threatening, he was in the best hands. Laura travelled to ECH in the retrieval ambulance with Phineas. By the time I got there the PICU team were hard at work stabilising him, and Laura, though still beside herself with worry, was comforted with the feeling that he was in the best place to get better.

Fatima Meho
Fatima Meho. Paediatric Staff Nurse, Beach Ward. Provided nursing care for Phineas on the ward. Photo: © Michael Cockerham 2010

The doctors in PICU were able to stabilise him sufficiently that he was moved out of intensive care onto Beach Ward on the Monday afternoon. From then on it was about supporting him as he got better, and trying to establish exactly what was wrong with him.

From the outset the doctors were fairly certain that he had a viral infection. The problem was that without knowing which virus, it was difficult to know exactly how he should be treated. At his worst Phineas had been cannulated to all four peripheries, his blood sugar was perilously low, his temperature was dangerously and stubbornly high, and he was on a CPAP (continuous positive airway pressure) machine to help him breathe. He was having bloods taken every hour or so, he had chest x-rays, and at one point they attempted to put a long line into him because his blood sugar was still dropping and he was on the limit of what could be given to him as a peripheral infusion without burning his veins.

Laura never left the hospital, only leaving his bedside to wash and eat. Over time it became clear that he was improving, but still the tests continued. Lumbar punctures, electro-encaphalographs, ultrasound brain scans. More infusions, more drugs.

Dr Emma Aarons
Dr Emma Aarons. Consultant Virologist. Ensures any patient with possible viral illness has the right investigations, and where tests show viral diagnosis that the appropriate care is given. Photo: © Michael Cockerham 2010

On the Wednesday afternoon I was sitting with Phineas while Laura got some lunch. Staff nurse Fatima Meho was attending to him while I flicked through that week’s Sunday Times Magazine. The cover story was about a patient in the renal ward at Great Ormond Street Hospital. I held the magazine open for Fatima to see and remarked how ironic it was that the story should be published just I was sitting in Beach Ward (the Evelina’s renal ward) with my son. “No one ever writes about us,” Fatima replied. I asked her what the difference was between Great Ormond Street and the Evelina. “Nothing,” she said. Both hospitals have the same specialisations, only the former is world famous and leverages that fame effectively to raise funds. I have to admit that I had never heard of the Evelina until I needed it.

It was Fatima’s response which set me thinking that I should document Phineas’ story and get some publicity for the hospital. But what was the angle? I did not want to rehash a story that has been done many times before. The fact was that although it was important to me, it was not significant to anyone else. If I was going to publish his story, it needed an angle.

The following afternoon Laura and I got a visit from three doctors from the Infectious Diseases Directorate. At first I was struck by how different these three characters were. Nuria Martinez-Alier, Ian Plumb and Emma Aarons seemed at first an unlikely trio, but it quickly made me reflect on all the different characters we had come across during Phineas’ time in hospital. Not simply the diversity of characters, but the sheer numbers of people involved. I had my angle.

Dr Marilyn MacDougall.
Dr Marilyn MacDougall. Paediatric Intensive Care Consultant. On-call when Phineas was admitted to PICU, she made the decision to retrieve him. Authorised the retrieval team and responsible for his initial treatment. Photo: © Michael Cockerham 2010

Over those six days Phineas was treated by about one hundred clinical specialists, about four fifths of them at the Evelina. There were doctors, consultants, registrars, nurses, matrons, ward sisters, students, phlebotomists, radiographers, metabolic specialists, virologists, and these were just the ones that actually saw him. There were as many, if not more, clinical scientists and technicians analysing and interpreting the various tests he was subjected to and samples taken from him. There was the ambulance technician and the retrieval team who collected and treated him on the journey to the Evelina. There was the counsellor who was there for us as parents.

As a photographer I found myself thinking about all the hidden talents within this huge team of people – the unsung men and women whose work as technicians and scientists underpin the decisions that the doctors make and the nurses carry through. The doctors get the plaudits, but the reality is that all these different facets of modern medicine need to work together to produce the outcomes that we as patients and parents yearn and pray for.

The more I thought about all these people, the more I kept thinking about Richard Avedon’s seminal work The Family, and more recently of Nadav Kander’s Obama’s People. Both these projects used portraits shot against plain backgrounds to highlight the differences in character – the repetition of style and of people was the motif, and yet it is this approach that highlights the enormous differences from subject to subject.

Tom Walton.
Tom Walton. Biomedical Scientist. Analysis of urine by gas chromatography and mass spectroscopy. Photo: © Michael Cockerham 2010

It is a form of typological study that was perhaps made famous by Bernd and Hilla Becher and their studies of blast furnaces, and taken up by other photographers including Donovan Wylie and his study of the Maze Prison. The difference is that with people the subject has the capacity to introduce its own character and agenda to the way that they are recorded; it is necessarily a two-way process. Certainly these are “my” portraits and they reflect something of my intention, but as each individual sits for me, they have control over the face that they present. For a good portrait there must inevitably be a balance in that “dialogue” between the subject and the photographer.

Avedon chose to shoot in large format black and white, with a simple white background. His subjects were the men and women who ran and shaped America. From Gerald Ford as President to Roger Baldwin, the founder of the American Civil Liberties Union.

Kander chose to use a similar approach to document the nascent administration of Barack Obama as he was about to take office, but in this case he shot in colour, with a creamy background. The images have been digitally worked to some extent, putting a shadow close in behind each person, and emphasising the texture of each person. There is a kind of hyper reality about them which makes each face fascinating to look at. Although the work was regarded by some as something of a departure from Kander’s norm at the time, it was nevertheless imbued with his artistic sensibilities. It had his “signature”.

Sean Hayes.
Sean Hayes. Retrieval Technician. Part of the retrieval team that brought Phineas back to the Evelina PICU from Darent Valley Hospital. Photo: © Michael Cockerham 2010

Both of these bodies of work were successful for the combination of simple, arresting portraiture and the fact that the subjects were either household names, or held positions of power that made their faces worthy of closer inspection.

For Phineas’ Friends I felt certain that a similar approach would be ideal. To the best of my knowledge no one had taken this approach with a medical documentary before, and the strength of the story would reside in the fact that as the reader moved through all of these portraits it would dawn on them that the common link for all of them was a single patient – a baby. None of these people are famous, nor was the patient. But the pull of such a small child as a narrative element is undeniable. Perhaps more importantly, we are all able to see ourselves in that baby. And when we do Phineas’ friends become our’s. These are our doctors and nurses and technicians and scientists. These are the people that keep each of us alive if we need them. As Phineas is a metaphor for all patients, so too his friends are a metaphor for all the clinicians working in all the hospitals around the world. Once we realise that, the old narrative beloved of dramas and documentaries seems a pale approximation of the truth – modern medicine is not a doctor and a nurse, it is a vast team of specialists.

Habiba Kawu.
Habiba Kawu. Neonatal Staff Nurse. Agency nurse providing constant care and monitoring of Phineas' condition while in intensive care. Photo: © Michael Cockerham 2010

Nevertheless I was conscious that for the project to work, the standard of the portraits needed to be high. Each image had to work individually while they all worked together as a set. The choice of background, the style of lighting, the choice of lens, and the subtlety of any direction I gave would have to complement the image and the intent. I wanted very much to give viewers something of the experience of the parent or the concerned relative. Hopefully I have succeeded.

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I decided on a whim to enter the book of Phineas’ Friends in this year’s Photography Book Now Awards. Although it did not win, it was shortlisted in the Documentary Category, and as a result was eligible for the People’s Choice Award. To have been shortlisted by the jury in the first place is a tremendous honour. But more importantly it gave me a glorious reason to push the work in front of people as I tried to garner all the votes I could. I was able to enlist the help of a great many influential people around the world, and that in itself has helped in my quest to raise the profile of the hospital. All of you who voted, thank you. Your support means a great deal. But it does not end there.

As I intimated earlier, my motivation from the outset has been to help publicise the work of the Evelina and perhaps raise its profile just a bit. As a part of that process, Blue Filter has published Phineas’ Friends in three formats: as an iBook for the iPad and iPhone, as a small format paperback, and as a limited edition signed hardback. All of these can be ordered from this site, and the profits from the sale of these books will be donated to the Evelina Children’s Hospital.

Please, buy the iBook or the paperback. If you are feeling flush and want some exclusivity, buy the hardback. But whatever you do, encourage all your friends, family and acquaintances to read this post and buy the iBook too. If you just want to donate with nothing in return, you can do that as well.

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Buy the iBook for iPhone & iPad

Buy the paperback

Buy the limited edition hardback

If you would like to support the Evelina Children’s Hospital, some of the Evelina Team recently undertook a sponsored climb up Mount Kilimanjaro, and you can still donate now. Their target was £400,000, with the current total raised standing at £396,616.63. It is to this fund that monies raised from the sales of Phineas’ Friends will be donated, but if you would rather donate directly, please click here.

19 responses to “Phineas’ Friends – a photostory”

  1. Francis Goodwin avatar
    Francis Goodwin

    Hi Michael – I read your story – what a good cause to work for ; I hope all is well with you and the family.
    Francis and Heather

  2. Sarah avatar

    The Evelina saved my daughter’s life five years ago. I am eternally grateful to the staff, the hospital and the NHS as a whole – we can’t afford to do without any of them. Thanks for raising their profile.

  3. Brian Benson avatar

    Hi Michael I just saw this in the Guardian Weekend and was minded of my own son’s time spent under the excellent care of the staff of the Evelina children’s hospital in 2008. I must say I don’t recognise any faces but my son was under ENT supervision in Picu and the time seems somewhat of a blur looking back. Congratulations on turning adversity into art and best of look. I trust Phineas made a complete recovery as did my son, but it is only on entering into these environments that you realise to have a brief visit makes you one of the lucky ones. There are a lot of children and as a consequence a lot of parents suffering and struggling in the Evelina. The high levels of care and consideration offered by the staff are amazing. I am very glad to see someone shining a light on their great work.
    Best wishes

  4. admin avatar

    Thanks for the comment, Sarah – I am pleased that you thought the work was worthwhile. My intention from the outset was to raise the profile of ECH and hopefully to raise some funds for it as well. The Guardian article has received a lot of response, and quite a few sales of the book and iBook, the profits from which go to the Evelina. If you think it is worth it, please encourage people that you know to read the blog and maybe to buy the book in one version or another.
    I hope your daughter made a full recovery. Best wishes, Michael

  5. admin avatar

    Hi Brian, Thanks for the support. I know exactly what you mean. Some friends of ours recently had a far more harrowing time at ECH than we did (fortunately theoir daughter survived but will bear the scars for the rest of her life), and while we were there we felt at times as though we should not have been. It was only when one of the doctors said to me “don’t kid yourself – if you hadn’t brought your son in, in all likelihood he would have died” that I started to wake up to how lucky we were. That week there was an article in the Sunday Times Mag about Great Ormond Street, and I showed it to one of the nurses and remarekd on the irony (as I saw it). Her response was “no one ever writes about us”. It was that comment that started me off.
    There has been good feedback from the article, and the books are selling whihc is raising money for them. Please do spread the word, and thanks again.

  6. Janet Maynard avatar
    Janet Maynard

    I was heartened to read of all the people who were involved in the care of Phineas during his recent illness and hope that he has fully recovered. However I was dismayed to notice that there was no mention of the pharmacist or the pharmacy team in the list of professionals involved in his care though Phineas received “a vast number of antibiotics and antivirals”.
    As pharmacists and dispensers we have an absolutely vital role to play in the health of the nation. The doctor prescribes the drug but if the pharmacist doesn’t provide it then there is no point in prescribing it. We are professionals too and not only perform a supply function but also have to ensure that everything we dispense is accurate and properly labelled to ensure the patient’s safety. Part of our role is to ensure that doctors prescribe appropriately for the patient. Much of the work we do is never seen by the patient.
    I do hope that your book is a success Janet

  7. Anna Carr avatar
    Anna Carr

    I worked for a long time in hospitals and nursing homes before moving into working with support charities. I am always amazed at the continuous flow of people involved with each patient’s admittance, recovery and discharge. Where the patient did not survive, another set of committed and caring professionals come into play. On their behalf, thank you for this book that highlights the dedication and compassion, as well as the specialisms, of all those involved.

  8. admin avatar

    Hi Janet,

    Many thanks for your comment and support. You make a very valid point, and one that I am acutely aware of. When I set out to shoot this story I worked, together with one of the consultants, from a specific set of clinical notes to determine who the appropriate people were to include within the story. Unfortunately it proved very difficult to identify who the pharmacists that actually dispensed his drugs were, and one of the criteria that I set out the outset was that I would not use just “anybody” to fill a hole. It was very important that all the subjects were verifiably connected to Phineas.

    As it happens there were quite a few people that I had identified but for a whole host of reasons was unable to photograph, so these 63 that I got represent “most” of them, not all of them. Sadly the Mail took the view that it was more “interesting” to say that these were all the clinicians and scientists; they were not. Allowing for everything that I know, the true number involved was closer to 120 across both the Evelina and the original hospital of admission.

    The reality is that 21st Century heathcare requires an even greater team of people than even I have highlighted with this story, but I could not (practically) photograph all of them. It is worth noting that a surgeon contacted me after the story orginally ran in the Guardian Weekend Magazine and said that even though he worked in a hospital he had no idea how many people were involved in treating a single patient. I guess we all have something to learn.

    My aim was to raise the profile of the Evelina specifically, and educate us all generally about the truth behind modern hospital care; how specialised, professional and brilliant it is. I hope that at least in part I have succeeded, and I take my hat off to all of you.

  9. Wisdom avatar

    I think this is a wonderful tribute to our NHS Service, but what of the unsung people involved? ie the Hospital Porter, the Receptionist & Ward Clerks. Let all think of them too

  10. admin avatar

    Hi Deborah,

    Thank you for your comment. If you read the last comment I made on this thread you will see that I addressed that point which you raise.

  11. Tracey Cummins avatar

    What a marvellous tribute to NHS staff. As a Fundraising & Voluntary Services Manager at Darent Valley Hospital I frequently hear wonderful stories about good care. Its such a shame that more of these are not printed in the press. Here at Darent Valley Hospital we have a new maternity and Special care unit and we are in the process of raising funds, under our Little Buds Appeal, to buy extra equipment. We are getting such marvellous help from grateful parents and cannot thank them enough! It was good to hear that Darent Valley Hospital acted quickly by transferring Phineas so he could receive the highly specialist care he needed which saved his life.

  12. Alia Youssef avatar
    Alia Youssef

    I read about your story in the Daily Mail, and I was so amazed at the number of people involved in saving your little boy’s life – who I wish is blessed with continued health.
    I am currently working on a presentation for my diploma and would please like to ask a favor.
    My presentation is about the worth of a human life, and I would like to use your case as a real-life situation in favor of the results versus the efforts needed. One thing I would like to ask though, is the cost of the treatment, and whether insurance covered any of it.

    If you could email me the answer (if you’re uncomfortable posting it) it would be much appreciated.
    If I’ve offended you, then I apologize. That was not my intention.

  13. Nikki avatar

    Hi Michael,

    This evening Dr Martinez-Alier called me to coonfirm my Son Tommy had had the Par-Echo virus. She suggested we try to contact you and to certainly read your story.

    Phineas’ experience completely mirrors that of Tommy’s last week. From the start to finish including the Doctors!

    The Evelina saved our Son’s life and I am so happy you documented all of this. It is all still very raw but Tommy is making a good recovery.

    I have just purchased the book and have pointed my friends and family in the direction of your site as it explains what happened to Tommy without me having to talk about it!
    Many thanks

  14. student nurse avatar
    student nurse

    As a student nurse at the Evelina I’m so proud and heartened to see this. I too always grumble a bit that no one ever writes about us so thank you for the support and the awareness you have generated. And most of all I’m so pleased that your experience at the Evelina was a positive one and wish you and your family the best.

  15. admin avatar

    Thank you, Student Nurse, for your comments. You may like to know that this story is far from being over – I am in the process of organising the exhibition of this work along with other associated events which will further raise awareness and boost publicity for the Evelina. Check back to this blog periodically and all will be revealed!

  16. Caroline McCarthy avatar
    Caroline McCarthy

    What an inspiring story, and so glad that your son made such a great recovery. You sound like a remarkable family…. Our 4-year-old daughter suffers with intractable epilepsy, and was taken the wing of the wonderful Evelina neurology team aged 18 months. We too have nothing but praise for the wonderful staff, whose care and attention to detail is second-to-none. They offer so much support, and it’s heartening to see their wonderful work so ably and publicly documented in your book. Right, off to purchase now and read more about your amazing journey! Your story is truly an inspiration

  17. admin avatar

    Thank you for your comments. One of the most unexpectedly rewarding things about creating this body of work has been the way that it has connected with so many people all over the world, and the fact that it continues to do so. The people at the Evelina are, as you say, remarkable, dedicated and professional. Thank you for buying the book, and for the support you have given them in their work as a result.

  18. Bryan avatar

    Thank you for sharing your story. Excellent detail and presentation.

  19. admin avatar

    Hi Bryan. Thank you for the comments. I have just looked at your Facebook page and seen the position you are in. Do feel free to contact me anytime if I can be of help. I am in the process of setting up a site dedicated to disseminating information about Parechovirus at the moment. The site should go live in the next few weeks. Best of luck to your whole family.

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