‘Beating up docs won’t save your loved one’
It was past 5 pm and I was emerging out of my cabin to go home when the vascular surgeon in the casualty called me to come and see a child.
As I hurried, I was thinking of the possibilities of a vascular surgeon in the emergency department seeking the services of a paediatric rheumatologist. At the casualty, I found a team of doctors standing by a 7-year old boy who looked extremely sick. His story had started with a fever and cough a week ago. When the cough worsened he was taken to a local hospital where he was diagnosed to have pneumonia and was administered IV antibiotics. But when he started complaining of a severe calf pain with no obvious external changes, he was referred to the nearest tertiary hospital. He was becoming confused and irritable, apart from suffering from the leg pain when he arrived at the hospital. He also had a seizure for which he was managed and stabilised. That’s when the team realised that the limb where he was complaining of pain had become cool compared to the other; his pulse also had become weak. He was then referred to our hospital for vascular surgery expertise.
When he arrived at AIMS, he had a cool lower limb, a disproportionately fast heartbeat, and was confused and delirious. He was quickly wheeled into the CT room for a CT angiogram. The result surprised all the doctors there - the surgeons, the radiologist, me, my paediatric cardiology colleague: he had his arteries supplying blood to his right lower limb and the upper pole of one kidney completely blocked while a few others partially blocked. And on the CT I saw the clue that connected all this in an otherwise healthy child who had been playing football over a week ago: there was a dense shadow in his chest-- what we call in medical parlance a consolidation or in common speak, pneumonia.
Some of the organisms that cause pneumonia can also cause inflammation of blood vessel walls as well, triggering a phenomenon called molecular mimicry: the phenomenon when the immune system recognises a pathogen and creates its ammunition to fight it. But sometimes some of the proteins created so can work against normal body proteins. And these proteins trigger clotting of blood in the vessels causing widespread thrombosis. In many cases, these proteins have no clinical effects, sometimes they have.
To put it simply, this young lad suffered from a double hit from his infection: it caused him pneumonia and the same organism also sparked off a series of immune misadventures in his body that now threatened, literally speaking, his life and a limb. He had a brain involvement, he had heart muscle inflammation, and he had a critical lack of blood supply to his right lower limb.
I had my diagnosis: the most notorious organism that would do this is mycoplasma pneumonia, a tiny organism in the spectrum between bacterium and virus, one that is difficult to grow. Only its antibody signature can reveal its presence. In a small section of patients it affects (most commonly school going-age children) outside the lung as well.
All of its effects outside the lung are through the immune system and thus need to be managed with more than just antibiotics.
We swung into action, and started medication to improve his blood circulation, cardiac functioning, to loosen the clots and control the severe vasculitic processes. One of those medications was intravenous immunoglobulin which is very expensive.
On many fronts, we started winning. His brain and heart functions improved and fever settled. All things were going well, but, for that right lower limb. Our radiologists, used to interventions in any part of the body, felt that trying to intervene with that block would not be useful. The rot was slowly but surely setting in.
There was only one option left: to amputate the limb. Not doing it risked further general deterioration and possibly fatal complications.
The family with whom we had all developed a decent rapport with was simple people from rural Kerala. They had seen that many things had improved since admission, and felt that the highly expensive medicine they had paid for ought to protect his leg as well.
It was not easy to explain the situation to them. I sat down with the surgeons and explained why the amputation was necessary. There was a lot of shouting, breast beating and thudding. Then they went out to think over, and came back a few hours later, agreeing with our plan.
The boy was then posted for surgery early next morning. By then another horde of relatives had arrived with different ideas. The result: the consent was withdrawn. They wanted to move the child to another hospital with a well-known vascular surgeon. We explained that it was an entire team looking after him here along with various paediatric subspecialists who were not available in the other place. Then they wanted a letter to go and discuss with the doctor there. By this time, the level of discourse with the surgical team was bordering on violence. The team, however, remained professional and asked me to keep the discussions going until a decision was made either way.
They met the doctor with the letter I wrote to him. He then called me up for details and told them quite frankly that saving his life was above saving a limb in this context. He also said the boy was better off in our centre because of the paediatric subspecialty support.
They came back, relieved that a decision was now made for them. Once again the consent form was signed. I got the clinical psychologist to prepare the boy for the eventuality. He underwent the amputation. It was surprising how calmly he accepted it and coped with the stump he woke up to. I also managed to find a well-meaning philanthropic professional from Bengaluru who arranged for his prosthesis and the frequent revisions he requires in view of his growth.
Today he goes to school like any other boy. He has learnt to run, and plays football and cricket with his prosthetic limb. There was even talk of training him for prosthetic runners! He’s an extremely happy, easy going boy of 12 years now. He remains on follow up with no permanent medications.
Millions of children get pneumonia every year and mycoplasma is among the common causes. Very few people develop such horrendous complications of the disease. I have seen two more such cases since then and they all got away intact.
No doctor was at fault; each referred as soon as they realised it was more than pneumonia. The family went through a roller coaster ride, with all sorts of confusing recommendations from people around them. But even when voices were raised, when tempers were rife, when emotions were bare, somehow all of us focused on the main issue: the young boy must live. Even at the cost of a limb.
Even common problems can have rare complications that are not anyone’s fault.
He lives now because:
He was stabilised and referred in time because of the surgeon who thought out of the box that moment in casualty.
Of the power of the team working against all odds
Of the power of trust
Of decisions in medicine that come in shades of grey.
Trust, any day works better than violence. Say No to violence against doctors. There are better ways of managing disagreement.
(The writer is professor and paediatric rheumatologist, Amrita Institute of Medical Sciences, Kochi)