Pre-empt

In the business of child health, a mentor once taught us that we must always be ahead of the babies and children. From the moment they come in, we should already be able to anticipate the course of the illness, complication and recovery, and pre-emptively sort them out. We do not wait until the problem arises, then go into a panic mode and make rushed decisions. 

In the district hospital that I used to work in, this ethos is well understood by the whole team. From the outset, if the doctor or nurse who first saw the child have any concern, whether it is a diagnostic dilemma or that the child did not look so good, we would talk to each other about it. We may alert the parents and the rest of the team about the concern or put on extra monitoring in a place easily noticed, and make sure that a senior personnel is to see the child before nightfall. When I first started in Paediatrics, I was an anxious ball and would become agitated over every tiny anomaly which I did not expect to find. But I am grateful that even as a junior member of the team, my concerns were usually taken seriously. Hence we are able to prevent lots of unanticipated problems. 

This is very different in the adult wards, especially the medical wards. It is extremely common to have several deaths in a day, more than half of those were unexpected, resulting in several 'crash calls' in a day (or night). 'Crash call' is a panic button that summons a team of doctors and nurses to come immediately, and is to be pushed only when a patient deteriorates critically suddenly. 'Crash call' in the UK hospitals are quite well run because the members of the team have been exposed to different scenarios simulated beforehand in training. But, over here, it is more like a circus of confused people arriving, no leader, no effective communication, only grumble and criticism at this most inappropriate timing. Needless to say, the patient outcome is usually poor. 

One of my colleague who used to work in the adult medical department, had recently join Paediatrics, and was asked to present on a case of a child who deteriorated during the early hours in the morning during his oncall duty. 

'The child was admitted at 3pm, with a chief complain of fever, altered behaviour for 3 days and 1 episode of seizure which lasted for 20 minutes'. On arrival his GCS was 11 out of 15 but haemodynamically stable. He was reviewed by the specialist at 5pm and started on antibiotic and anticonvulsive treatment. Night review was done at 7pm and the child's condition was the same. At 4am the staff nurse was called by the mum as the child had suddenly became unresponsive. On my review, the GCS was 3 out of 15, hypotensive and bradycardic. He was intubated and sent to ICU.'

The boss was clearly unhappy. 

'In medicine, there is no such thing as 'suddenly collapsed', 'suddenly deteriorated', 'suddenly became unresponsive'. I do not want to ever hear those words again. The child was last seen at 7pm, What happened between 7pm and 4am? The child was at the acute bed with continuous monitoring. What did the observation show? What was the level of consciousness in the interim?'

My colleague were unable to answer. GCS was not recorded and observations were not documented clearly during the interval 9 hours. For the child to deteriorate to the point at 4am, there would have been some signs that the body was compensating, and all the members of staff on duty that night have failed to pick them up. From this example, we all got the message and went on to improve patient care by working on this very basic principle of medicine for every single child that came through the doors.

I requested for transfer to this tertiary referral centre to further my training in Paediatrics. To my dismay, such basics are even more poorly done here. There is a systemic problem of too many staff, too many teams, too many leaders, too many egoistic heads, as well as a system of office politics and culture that have been ingrained in this institute for many decades that are not easily corrected. The Paediatrics department is huge and the sub-departments who are supposed to provide support are not always easy to talk to. I see more of the bad habits of adult medicine surfacing, for example kicking patients like a ball from one sub-specialty to another, or from one ward to another, to avoid the responsibility of being the primary team. Every workplace has its strengths and weaknesses, and it is working with the systemic limitation that upsets me because I cannot give the best to my patients.

However, as another of my mentor who has worked in this dinosaur institute for many years said: 'Aim to save one patient at a time'. I am a tiny minion and I have conceded that I cannot change the system. So I am using the principles of good practice that I have learnt to look after the few patients I see. And so far, I have been able to prevent a few patients from failling into the state of 'suddenly collapse' by starting antibiotics early, fluid resuscitating early, starting inotropes early, referring to ICU early. 

One of the parents once told me he would like his son to be admitted to ICU because he felt the doctors there are better. In his son's previous hospital stay, he had experienced watching the ICU doctors rushing to the ward in an emergency, intubating the child, performing chest compressions, inserting various lines to save the child. He felt that the ward doctors were inferior as these jobs are not their routine. This is the trouble with people watching too many dramas on TV, who sensationalises this heroic image of being a doctor. 

Please. Every doctor is able to help in any emergency situation, but to what extent? If only one can feel what a doctor feels during those surprise 'patient collapsed' situation: rushing to the scene, internally your heart is palpitating away, you feel a little dizzy from hyperventilating, your hands become cold and your brain starts to freeze; externally it is a havoc, no one knows what is going on, who is who in the team, who is this patient, where equipments are kept and who has done what. Besides, once a patient succumbs to the point needing CPR, much irreversible damage has been done. The patient stands little chance being treated in this extremely uncontrolled environment. It improves though, the profession has started to realise the importance of teamwork and effective communication in such high stake scenarios (but this awareness has yet arrive here, I am afraid).

Who you really want is a doctor who is able to prevent you from falling into that state. Problems are always easier to tackle when recognised earlier. There is completely no need for 5 doctors rushing to stick huge needles all over the patient instituting invasive treatment when one injection of antibiotic given 5 hours ago could have prevented all these. 

An unknown hero is the real hero. But a good doctors do not care, he or she just want to be able to sleep well at night. 

Do the basics well. Being able to pre-empt problems is one of them. 

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A disability is not a disability to a child

One of the most amazing insights that I have gained working with child is seeing how this group of little creatures adapt to misfortune.

Parents are often upset when they learn of a disability in their child. A child born without his right arm, a girl with a spinal deformity making her never being able to walk, one who has hereditary cancer of the eyes that defines her blind. Even the doctors and the nurses cannot help feeling pitiful for the kid. How is this child going to survive life, in this cruel, unforgiving world? We foresee the mountains of difficulties. The child would be looked at and treated differently. Kesian, kesian... This must have been the expression most commonly surround this child from the time he arrive in this world.

Fortunately, the child being born ignorant does not comprehend such expression. He does not realise that how others see him matter. He does not understand that it is a deficit to be born without a limb, or a sense. He simply go about exploring the world with whatever resource he has with him, and make a sense of this world. And he would find journey of exploration as enjoyable as his counterpart born 'perfect'.

S was my first teacher. He is now 18 years old. The senior paediatric orthopaedic surgeon of the team had known him since he was born and keeps a photo record of his case from the time he was a neonate till now. He showed us pictures of his legs auto-amputated from the knees while he was still in the mother's womb. As a result, his leg prosthesis have been part and parcel of his life since. Yet, there is nothing to feel sorry about for him. He is as lively as any other boys, who would sometimes test the patience of the the adults, just to see where is the line drawn. When I was attached to the team, this boy was admitted for infected wounds on his knees. He has been told to get off his prosthesis for a few months in order for the wounds to heal, but how would he go about doing Taekwondo (a black belt holder), going out with his girlfriends and training with his police cadet corp in school without his prosthesis? So the wound deepened and he was admitted. In the ward, we were able to take away his prosthesis to rest him forcefully. That was the plan, but it didn't work. Often I cannot find him on his bed, or even in his ward. He would often be on the wheelchair, roaming the corridors and in the other wards trying to chat up the other patients making friends. I once caught him in the men's toilet, holding on to the plastic bars frame of the toilet doors doing pull ups! When I met his mother once, out of routine, I asked her if S has been registered an OKU (as a disabled person). To my surprise, the answer was no, eventhough there is no doubt that a double amputee qualifies for the label. It is not because of the fear of stigma or anything complicated like that. The mum genuinely did not feel that S is an OKU, being him as he is doing normal this that boys of his age do.

This boy made me believe that there is no need to feel pitiful for children with disability, in contrary to what I have been taught. Remember those moral lessons in school, that compelled the students to have a 'sikap belas kasihan' to blind people? I am a sure a professional film crew can easily cook up a sob story about S along with all the melancholic sound effect to accompany the story of this unfortunate boy who was born without his legs. We have all seen it. But the reality is not like this. The difficulties they face in adulthood arises from such societal conditioning that we are subjected to. If we all treat S like how his mother treat him, i.e. a normal person who will try and manage with whatever resources that is available to him, there would not be any difference between us and them.

Later on in my career, I have had to meet parents of children born with problems. A child without a limb, a blind and mute baby as a result of a congenital infection, a child with very limited sight due to his extreme premature birth, a boy with speech delay who portrays features of autism, a child would cannot read and most likely has dyslexia, a child with cleft lip and palate etc. Parents to newborn with such problems are often very worried and upset, but I am always able to confidently convince them that it is a manageable situation, that it is not the end of the world. As the child grow up into toddlerhood, it is very satisfying to see parents bringing in their child to clinic in a relaxed state, sometimes chasing after their child telling them off for being naughty, in other word treating them like any other children. These special children know their children so well and takes pride in any strength their children display, and I am always delighted to learn about this side of them.

Cognitive disability is sometimes less easy to adapt compared to physical disability, just because of our education system which caters too narrowly for the most academically able group. I dare say of all the 'normal' children, at least half are not be able to fully benefit from our education system, in the sense that the system does not bring out the best potential of each child. I have often received referral from schools who want their student to be signed off as an OKU (with cognitive problem or learning disability) because they cannot keep up in the mainstream school. In the form, the doctor is suppose to recommend appropriate education placement for the child. I am often perplexed that I should be filling up this component. I am reluctant to label any child OKU just because they are non-specifically slower in learning compared to their peers, bearing in mind that I am not particularly a bright student myself. The teachers and psychologists are supposed to be the ones who are the expert in this field, not a doctor. I cannot simply choose and tick a box putting a label to a child after one clinic session. I often spend these sessions discussing with parents the actual aspects that is problematic about the child (in contrast to what the school thinks), the aim of education specifically for this child, how to ensure he can lead an independent adulthood. I teach them to rely less on the system and put more effort to help themselves.

A disability in a child is not a curse. It does not bother a child and it should not bother us. Every individual is unique in their own way and we should allow each to develop into their full potential in their own way. I thank all the special children and their family whom I have the privilege to work with in all these years, dispelling the dogma drilled into me, and teaching me a unique kind of resilience I did not know exist.