"Ali"
I was a resident pediatrician working in the busy Emergency department of my busy government hospital, when I received a patient named "Ali".
Ali was a four-year-old boy, who was brought by his parents to the emergency room. My team and I received the healthy-looking boy in a state that would be hard to see for a non-medical professional. However, for me a child with upturned eyes and a convulsing body was a routine event. We, my team of house officers and staff nurses, secured the boy's IV line and administered an anti-seizure drug, bringing the agonizing condition to a temporary end. It was only after the seizure had stopped, that I turned to the distraught mother, a burly woman in early thirties, and asked her fo0r details. She told me that Ali was a healthy boy up until that day, having fever and fits for just one day. On further probing, she told me that he had been falling a lot for a few days and had been saying meaningless things off and on.
He was admitted with the provisional diagnosis of encephalitis, which is an infection of the brain, along with suspicion of degenerative brain disease as a differential diagnosis. That night the pressure in his brain was so high that we couldn't take any tests from his spinal fluid. His blood work showed severe infection though. He didn't wake up the whole night and had multiple seizures while he was on the bed of the pediatric ICU (intensive care unit for children).
Two days later we were able to take fluid from his spine to look for bacteria or pus cells in his brain, but weirdly there was none. All clear.
And yet, his fits remained uncontrolled, a condition we call “status epilepticus”. He was placed on multiple antiepileptics, antibiotics and a number of other supportive medicines. His CT scan showed multiple areas of infarcts, which is a kind of brain damage, when the blood supply to a certain region of the brain is compromised. All available tests in our hospital were done with no improvement in the child.
His fits were so severe that we had to keep him sedated. A test for autoimmune brain disease was needed but it was very expensive and the attendants, like most of our patients in government hospitals, were very poor and non-affording.
We, the doctors of Paeds ward, collected a sum of money for little Ali and paid for the tests but no diagnosis could be made. It was not tuberculosis of the brain, autoimmune encephalitis, meningitis or MS. What was it? I was a second-year resident, and I didn't know but so didn’t my seniors at that time. We empirically treated him to no avail. Ali's muscles kept getting more and more rigid and started looking like a paraplegic CP child. The only thing left was genetic testing and there were no more funds. And it was a very likely probability, considering that Ali’s parents were cousins, and he was the elder of two siblings.
It was hard for the parents, with the mother weeping by his side every day, every hour. And the father exhausted with his work as a laborer and simultaneously taking care of the little brother of Ali, who was just eighteen months old. He talked to me one day with tears barely held back, "Doctor sahiba... when will he be ok? I am unable to find more work as i am here the whole day. We are out of money.. we can't even afford food at home."
It is the worst part of being a doctor, when you have immense empathy for the parents, to deliver the bad news ... over and over again. I silently gathered courage and told him, "Things don't look good. Ali has massive brain damage. We are trying our best but he isn't improving. I can't tell you when he will be discharged because I don't even know if he will make it or not. I'm still trying whatever is in my power to make him better."
The pale face of the lanky fellow was even paler and then he let out a sigh and said, "Then you keep working and we will pray to Allah".
One day, on my duty, Ali started having shallow breathing. I gave him breaths by Ambu bagging but I could see that his body and brain were finally giving up. If it were another child with even a slight hope of better health, I would have immediately intubated him and placed him on ventilatory support. But here there was no hope. It was over. It was time to let Ali rest.
I could see the fear of the inevitable in the eyes of the mother who barely held herself together in the hope of something good coming from my mouth. I asked for the father, who came running... sweat pouring from his ashen face.
I told them that it was time. The father, in a languid voice, accepted it but before he would convey what I had quietly told him to his anguished wife, I left.
I had some personal issues with the death declaration in those weeks (my son had died a short while ago), so I asked my junior doctor to declare the imminent death, while I sat in the doctor’s room. 10 minutes later I heard the mother’s cries and, well, I cried too, knowing what she was going through. It was probably not professional, for me to cry. But I did. I knew what the mother was feeling. I knew that when the death of the child was declared, so was that of the mother, even though she would appear living and breathing. I knew it too well... and it was too close to home.
I wish this tragic story could end just there. Just 6 months later, the same parents brought Ali’s younger brother Ahmad to ER, febrile and fitting, in status epilepticus. It is painful to even recall and tell this story. This time, more workup was done, and a diagnosis was made after genetic testing from money collected in the form of donations from multiple people.
It was an autosomal recessive neurometabolic disease, a disease affecting brain development which is genetic. The parents were counselled not to have more biological children.
Little Ahmed survived for a few months but ultimately became a paraplegic child with multiple issues. A short while later, he too lost the battle and succumbed to his disease.
I didn't have to declare the second death but when I came to know about it through my colleague, I was quiet for a long time, until I checked my next patient. I knew that it was just another scar I would carry on my consciousness as a Doctor of children.
