I LOOKED at the small boy in red shirt and blue shorts. He had an impish smile and dimpled cheeks. The face radiated intelligence and good humour.
‘He likes these colours. He has started choosing his clothes,’ the mother said apologetically.
As a doctor I am sometimes asked this question: do you believe in miracles?
It depends on what you mean by them. If you mean something absolutely unexplainable, then, no.
Everything is explainable – sort of. I think it is a feature of our world that most things are. It is indeed a curious fact.
Even when things are somewhat mystifying, logical conjectures can be made. But the way some things fall together are sometimes miraculous.
I looked at the boy standing before me. He was almost four years old. He looked perfect and whole except that he had a bald head.
A few wisps of hair were there at the extreme margins, but the general effect was of a fair cropped head, gleaming under the light streaming in from the window.
It did not detract him from a general air of smartness and health. I reached over and gently pressed the top of his head.
My hand did not encounter the hard resistance of the skull. My fingers sank in a shocking mushiness, directly pressing the brain that was there under a parchment like skin.
‘Hi, doctor uncle. My father often doesn’t let me play with other boys,’ he said in a peeved voice.
‘I can do anything. See?’ To demonstrate, he ran around in circles in the small room. The red and blue of his dress whisked themselves into an incongruent mixture.
Red and blue usually don’t mix. But there is a perfect blend of red and blue that I see on most days – blue blood. Blood in the veins.
But it is one thing to see it during a surgery, when it is mostly a technical problem to be tackled, and quite another when it is pouring out like from a tap from the top of a newborn’s head, in the ward.
‘Rajesh is sometimes naughty,’ the mother said. I have never seen a mother who doesn’t say this.
The name Rajesh didn’t stick in my brain. But I knew the name of the mother well. That is because newborns are listed in hospital records as appendages to the mother.
Baby of Saroja. That was how he was known when he came to us. He came to us with the top of his head missing.
The child was referred from some other hospital to Dr. Suhas, the pediatric neurosurgeon.
‘Come and take a look at this,’ he said over the phone. He sounded rather worried. It takes a lot to worry a neurosurgeon, and I was curious as I walked into his OPD.
The tiny patient had been born only a few days previously. The child lay wrapped in his mother’s lap, and the father and the grandfather looked on anxiously.
The parents looked ridiculously young and vulnerable.
Suhas gingerly removed the towel that covered the baby’s head. There was a gauze dressing, which also come off.
There was no hair on the top half of his head. In fact, there was no skin there. No skull either. A thin slimy film of infected crust covered a dirty white membrane under which there was a throbbing motion.
It was the pulsating jelly of the brain covered by the thin leathery membrane called dura. Usually one had to negotiate the skin, many layers of the scalp, and cut the bone of the skull to see this.
Here it was, the dura, exposed to the elements. The dura was essentially a bag with clear liquid called the cerebrospinal fluid in which the brain lay floating.
There was a rim of intact skull with skin and hair like scrub covered embankments to a forest pool.
I examined him. In difficult cases like this, usually my mind conjures up a multitude of possible treatment plans. Now nothing occurred to me. The technical surgeon in me was numbed into submission.
‘We will admit him. Isn’t it?’ I looked at Suhas tentatively.
‘Of course,’ said Suhas. ‘Then we will –’ He looked at me expectantly. I was the expert at covering exposed vital structures like the brain.
‘Then we will see,’ I replied.
‘Of course.’ Suhas nodded with complete assurance. I looked serious, but calm as if I was in total control of the situation.
We doctors master the art of looking confident. It was a necessity. Otherwise not only will the patients trust be undermined, but they will lose heart.
‘But what will you do?’ the grandfather asked us. It was a fair question. We told him that everything possible will be done, and that we had to discuss.
We discussed. We searched. The internet is a boon. It was difficult to imagine a world without it. We also phoned up people. None had any experience worth sharing. But we learned a great deal.
The birth defect was called ‘Aplasia cutis congenita’. Translated into plain English, it just meant ‘absence of skin from birth’.
It did not convey the horror of the situation that we encountered. Many surgeons had managed smallish centimetre defects with small scalp flaps.
These were local scalp tissue that were partially cut and then pulled and rotated to cover the defect. But in very large defects like these, the available papers were silent.
Two days went by in indecision. We kept dressing the wound. The miniscule under-two kilogram baby was kept in the intensive care unit for sick neonates.
The third day morning, both of us were seeing the patient together. An added layer of slimy dirt covered the wound now. Suhas pointed to the few drops of clear fluid that had appeared on the dura.
‘Leaking cerebro spinal fluid,’ he said. ‘We have to do something. It will get infected. Uncontrollable meningitis is imminent.’
I nodded and scratched my chin as I thought about what had to be done. That was when it happened.
A small dot of red with a bluish tinge appeared right at the centre of the exposed brain covering. It enlarged before our eyes and slowly resembled an overripe plum. Then it burst. Venous blood started pouring out.
‘The sagittal sinus. It must have burst,’ Suhas said as he frantically put on gloves to keep a dressing pressed on the bleeding spot. But the bleeding didn’t stop.
A tiny newborn like this one doesn’t have that much blood volume. Within seconds the baby became pale as death.
Indeed, the heart stopped suddenly as the bedside monitor blared and the ECG line went flat. It seemed that he had bled to death.
The heart and breathing had stopped. Both of us bellowed ‘Cardiac arrest’ and the nurses came running. The neonatologists were there in seconds.
The cardiac massage in babies is really easy. You just need to press down rhythmically on the chest with your thumb. Putting a tube down a small baby’s throat was the work of seconds for our neonatologist.
The reason for the baby’s collapse was blood loss. Along with artificial breathing and heart massage, the baby needed blood. Other fluids were rapidly given through an intravenous line temporarily.
Blood was arranged with lightening speed. A thirty millilitre infusion of blood, and the pulse came back. This was possible only because by that time the bleeding had stopped.
The fountain at the top of his head that was sucking out the very life out of the baby had ceased – for now.
What was a vexing problem had become an urgent issue that had to be solved.
Exposed arteries and veins bleed when there is infection and the wall corrodes and gives way. It was not only possible, but highly probable, that it may bleed again.
Taking a large muscle from the side of the patient and covering the top of the head and making the muscle into a living covering by microvascular surgery was one option.
In a newborn, it was extremely difficult. It may even be dangerous. I mentally ruled out this possibility.
The only other option was to take whatever thin strip of scalp skin left at the back of the defect and hinge it on both sides, where a major artery supplied the skin of the head just above the ears.
The plan would be to raise this long piece of skin leaving a thin covering (the periosteum) over the skull bone.
This will still be attached by a narrow stem of skin containing an artery on both sides.
The challenge was formidable. I had never done a scalp flap of this magnitude on a newborn.
Plastic surgeons get to operate on newborns only rarely. A newborn’s head is very large compared to its body. The planned flap might cover the defect at the top of the head, but it will leave a raw wound of a large size at the back of the head.
The thin membrane-like layer over the bone had to be covered by grafting the baby’s own skin. Both the baby’s thighs would need to be stripped off skin to supply this.
This would be an extensive procedure which the miniscule patient may not stand. It takes at least two weeks for the thigh wounds to heal. Meanwhile they might become infected, which might be fatal.
Besides, would all this be worth it? ‘Judge not, and just do what you have to do’. That was what one of my former teachers had said. What he meant was not clinical or treatment judgement.
What he referred to were some peculiar moral dilemmas associated with certain decisions.
Will we be able to save the child? I had to agree that the chances were slim. Further bleeding, meningitis, or the inability to withstand the sheer enormity of it all might snuff out the nascent life.
But then why do the surgery? One has to keep in mind that for a surgeon, death after surgery is always worse than a death before surgery. The former is always attributed to the procedure. The threat of blame is always there.
But then, if there was some chance, shouldn’t we give it a try? Even if it was risky and expensive?
Even more sneaky and unuttered are the queries about the value of the patient. Unthinkable – yet they are there at the back of the mind.
They lurk like shadows, grey and formless, on the minds of the doctors, the relatives and even the parents.
A tiny newborn is a person – but barely. The hopes, expectations and attachments of a normal member of society are just being assigned to it. Is it worthwhile to try and save a newborn with a severe deformity with heroic but possibly pointless methods?
And will the child be normal? Such a severe outward deformity close to the brain may not occur alone. So often in development of the embryo, nearby structures are affected. Sometimes severely.
He had had a cardiac arrest. It was some time before he was revived. Did lack of oxygen during that time permanently damage the brain in addition to whatever other brain defects he may have had? Would the child grow up to be severely mentally retarded?
Would he have intractable seizures or paralysis? Would he be a dependent vegetable? If he would be, is such a life less valuable? Who can decide all that? Can we play God?
Questions are endless, but the answer can only be one. We talked to the parents. The risks were there. This was a chance. Should we go ahead?
When the issues are complex, it is almost never an informed decision from the patient’s side. They read your words, tone of voice and your body language.
Then they mirror their own opinion. More often than not, that is what happens. We cannot decide for the patient. But our opinion just gets across to them by some primordial ESP.
Here, it was decided to go ahead with the surgery. The grandfather did ask me the question.
‘Doctor, will the child be normal?’
‘We will have to hope so,’ I replied. I couldn’t hide an inadvertent shrug of the shoulders. Suhas looked studiously at the ceiling. Or to the heavens?
That the surgery went smoothly was remarkable. The layer of infected slough over the thin membrane over the brain was painstakingly stripped off by Suhas.
Some sticking clots of blood were not disturbed. We didn’t want the vein to open out again. Then we washed the dura clean. Tiny dewdrops of cerebrospinal fluid slowly congealed on the surface.
They were beacons of small breaches in the brain covering all potential gateways for all-ending infection. My scalp skin flaps had to seal them satisfactorily. It was a tall order.
There was a concern that the entire rest of the scalp was enough to cover the defect. But it was. I looked around for sighs of relief. But only I had heaved one.
All the rest had blindly believed my judgement on this. I stopped with that. I did not cover the vast wound that gaped the back of the child’s head, from where we had taken the flaps. I decided to do it later.
The baby was spared of the skin grafts that should have been taken from both thighs, for now. The father of modern plastic surgery, Harold Gilles, had once said:
‘Never do today what can honourably be put off till tomorrow.’
Was delaying the skin graft honourable? In Medicine, the final judge was outcome. We had to wait.
There were many possible outcomes. I anticipated all or any of them. The baby could develop meningitis and die. There could be another bleed, and it would die very swiftly.
Or it could survive, the flaps would settle. The defect would be covered and the raw area that we called the secondary defect would have to be grafted. Another surgery.
Another wait. The relatives would get further edgy.
‘What next, doctor? Will the wounds become infected? Is the baby okay now? How long will this take? Will the baby be normal?’
All questions to which I should know the answer, but didn’t. I felt the top of my intact head heating up, enticing whatever hair follicles were left to give up the ghost.
I could picture myself as a calm software professional with a full head of jet black hair.
What ultimately happened was that the flaps died. The baby remained alive. It left my face as black as the dead and decaying skin covering the defect, which had to be removed as quickly as possible.
The baby was having a fever. “Something” had to be done, and fast. I had no clue as to what that something was. It was hopeless.
And the parents deserved a briefing. If we had given up at the start, it wouldn’t have looked this bad.
In these kinds of situations, there was only one course to follow – tell the bloody truth.
I talked to them about the difficulty of managing the complex deformity. I told them what we had done till then. Then I told them that the final surgery was a failure.
‘It was done correctly. It would have survived in a normal person. We really don’t know what happened. You know – all is not in our hands,’ I said. God should exist – at least to accept some of the blame humans assign to him.
Now the problem had escalated to an extent that it looked insurmountable. The defect was still there. The flaps had to be removed.
The secondary defect was a big open wound. That problem was created by me. The entire head was now a wound. Even if we were to put just a skin graft, we would have to take all the skin from both thighs and legs of the tiny thing.
The skin graft was enough to cover the secondary defect caused by removal of the skin flaps. But a thin skin graft was not enough to cover the brain and dura.
But as a temporary cover, skin was enough. But it was almost certain that the child would not stand such a big surgery.
‘I want him to live.’ The mother spoke up suddenly. Everyone looked at her. Usually she was very silent. There was more desperation than determination in her face.
Suddenly I had an idea.
‘We can take skin from the mother and cover the wound,’ I said.
It was sometimes done in burns. Preserved skin from dead bodies could be used. Fresh skin from a live donor was better as they stick just like the patient’s own skin and the wound heals. But only for two to three weeks.
After that the body rejects another person’s skin, just like it would expel foreign viruses or bacteria. A close relative’s skin, like that from the mother would last a few days more. That was all.
Even after telling her that the solution is temporary, the mother was eager to give skin. Giving skin is not a trivial thing. The post operative period is painful. It takes two weeks to heal. The scars are permanent.
Time would stabilise the baby a bit. When the skin started to peel off, we would do the skin graft with the child’s own skin. At least, that was the idea.
‘I will give skin,’ the father said.
That was also fine. Any one of the parents had equal genetic relationship with the baby.
‘No. It has to be the mother,’ I said. I had no justification to say that. But I did. I later wondered why.
The grandfather was very sceptical by now. Fortunately he did not doubt our good intentions. But his question was what was also in our minds. Was it worth it?
Will the cerebral fluid leak stop with only a graft? Wasn’t a proper flap cover necessary? Were we being realistic about a major surgery later?
‘Will he grow up to be normal?’ he asked worriedly.
He did not get a satisfactory answer because we had none to give.
The mother’s skin took up beautifully. The wound healed. Fever came down and the child became active. It sucked vigorously at the mother’s breast. The baby was sent home and asked to come for a review every week.
We waited with escalating dread for the skin to come off.
It did peel, but only in patches. Small bindi-sized wounds appeared. One month passed. Then three. All the wounds healed. The baby had started to smile by now. It looked at people with interest. His development was normal. He became a toddler. He was standing before me now.
Of course. Now I knew what had happened. I looked up all the research papers. Another person’s skin would be rejected. But not always.
During birth, there was a mutual exchange of cells between a mother and the baby. The foreign cells in the body are usually instantaneously recognised and killed.
But in certain very rare instances, the baby develops some tolerance to the mother’s cells. They would live on in the child’s body.
In such children, the skin of the mother may be rejected very late, or not at all. But a father’s skin will always be rejected.
‘Can we put back bone in the defect? And is there a way of growing hair on his head? I am ready to give some of my hair also,’ said the mother.
I scratched my head and cleared my throat.
‘Well, the options are –’ I began cautiously. I thought furiously. We could put an expander under the still intact area which had hair; expand it like a balloon. Use that to cover part of the front area.
Then maybe be take, one or two ribs from him and split it into thin sheets and bury it to plug the bone defect in the skull –
People want miracles on top of miracles. The fact was they did get them. The only thing was that most don’t realise it.(Jimmy Mathew)