Working with sick children is a journey that has its joys, its pain, its ups and downs. It is highly rewarding to accompany the child and their parents in their journey but, the most challenging scenario that any health professional dreads is dealing with child death. After all, the first year of life is still the most dangerous.
I can still vividly remember the cases I was involved in. Whether it was a child with a life-limiting condition or sudden infant death, the emotional impact on healthcare professionals is enormous.
My first case happened within the first few months of joining the registrar rota; a 6-month-old infant who passed away unexpectedly at home when asleep. I was heavily involved in the case; I felt emotionally overloaded at that time, physically weakened and reduced by the sadness of the situation, but I had no opportunity for debrief, feedback or reflection. I had to carry on with my shift and go back to a busy ward. Even afterwards, there was no mechanism within the trust to support doctors and nurses after dealing with such a stressful situation.
It seemed that there was an expectation of us to deal with whatever emotional injury we felt from such a traumatic event in our own private time. So, when I hear a recent report that doctors are “injured” by stress, I feel it reflects exactly what is happening in some of our workplaces . I wish NHS leaders would remember that we are human beings too and that we are also affected by the suffering and the difficulties our patients face. How can we be expected to be strong and deal with whatever the job throws at us, when we are made of the same human components as everyone else? We too need support from kind and caring workplaces to deal with the stress of our job.
Since my early days as a registrar, some workplaces have made improvements and group debriefs are often now encouraged, but perhaps the greatest learning experience I have had in my professional life came not from management, or clinical colleagues but from the parents of a patient.
Patients are usually grateful to healthcare professionals for looking after them; indeed medical culture is built around the supremacy of the medic’s expertise, for which patients are expected to be humbly grateful. But when medical culture fails to show us the support and metaphysical learning we need to survive, where can we turn?
For me, the most memorable experience of my career so far came from working with an amazing baby and her parents. On a shift in the Neonatal Intensive Care Unit, a baby was born with congenital anomalies including a defect in the spine. I spoke to her parents before her birth and I was amazed by their positivity and how well prepared they were considering that she had a severe malformation for which she had to have surgery on her first day of life.
When baby J was born, her father came over to me and described her beautiful wide eyes, her gorgeous hair, how tall she was. All I could see at that moment was the severe back defect she had, her eye problems and all I could think about was whether she would survive surgery. Her mother held her and both parents had tears of happiness, repeating to each other how gorgeous she was. It was obvious they were over the moon. We, the health care professionals in the room, were all emotional watching that scene.
Baby J had surgery, she did really well and her parents were by her side throughout her journey. I got to know this little girl and her parents more with each day they spent with us. Their positivity and optimistic world view was contagious; I would feel happy every time I talked to them. I would think to myself, “why am I worrying about so many trivial things? These amazing parents, despite all the challenges, are still smiling every time I see them.”
Now I know that we can be happy if we only change the angle through which we look at events; being optimistic and focussing on what is positive was their secret to happiness. To say that they taught me a very important lesson is an understatement; they taught me that everyone is special however differently they look, whatever physical, learning or mental needs they have; every person has something special to offer our society. These were amazing parents who accepted their daughter as she was and loved her unconditionally. Their happiness when they held her despite all the bandages and tubes she had attached to her meant they did not allow themselves to be depressed by the future and what it might hold but were simply happily living one day at a time and enjoying the most from it.
We are pushed so hard to achieve perfection, and that is not necessarily wrong. But it does mean that anything less than perfection leaves us disappointed, demoralised, devastated. If we expected nothing and saw everything as a bonus, as baby J’s parents did, how much more grateful would we be?
In an increasingly driven and frantic world, it might feel reassuring to make plans but how often do those plans go awry? How often do our expectations mean that reality falls short? Sometimes we are so busy planning for the future that we do not see what is happening under our noses. Sometimes just living one day at a time, doing our best and acknowledging that we are all different and special in our own way is enough.
I will never forget baby J and her parents and I hope that I will never lose the perspective they gave me.