7 years old child comes to us with falls since 15 days. I take a long history trying to see what is causing falls, what is he suffering from. Then he has a slow fall in front of us and we know what it is. We ask them for a few tests to confirm before we say anything to the parents. It took 4 days for all the results to add 1+1+1 while the child’s frequency of falls kept increasing. Finally it was confirmed. We have all the evidence to give their child his death sentence. This child has subacute sclerosing panencephalitis. It is caused by measles virus. Who develops this untreatable complication and who develops simple cold and rash cannot be predicted. That is why vaccine is there in our national immunization schedule. This child was vaccinated. There is no history of measles infection as far as parents can remember. They fail to understand how can their child have it when they have taken all precautions, took vaccinations. You spend time explaining how this disease incidence is 7/100 in measles infection and it reduces to 0.5/100 in immunized child with infection (It is not caused by vaccine virus but measles infection in a vaccinated child which will be mildly symptomatic or asymptomatic). It is very unfortunate and current science doesn’t have any treatment any where in the world. Your child will slowly have increasing falls and won’t be able to walk, then he will start forgetting things and then won’t speak followed by swallowing difficulties and slowly will be bed bound and will die in 2-3 yrs. Nothing we do will stop this but may slow the progress which is also not guaranteed. Mother cannot stop her tears and you remember your child at home. Tears well up but you swallow it up and keep a strong face. They went around and someone tested for another virus called herpes and that came weak positive. They came back asking to treat herpes. To satisfy and get their acceptance of their child’s fate we repeat CSF analysis and test for Herpes and prove it is not Herpes. During this 2 day process stretched to 4 days by lock down we answer their questions of hypothetical situation of successful treatment of Herpes with despair. Finally tell them that the test is negative and it is still an unfortunate disease. Mother bursts into tears and recalls a small rash on hand at 7months and asks why are we not giving vaccine much early like BCG. Mother’s measles antibodies transferred to baby are supposed to last up to 1 yr. That is why this vaccine is not given till 1 yr in other countries. We give early due to high incidence of infection in India. Recently it is found that vaccine induced immunity is waning with age and it is better to give booster before child bearing age to maintain maternal immunity. Recently in India there was MR campaign to give measles and Rubella vaccine to all children up to 15 yrs age to ensure this. Unfortunately we might have missed that opportunity in this mother and child. While they accept their child’s death sentence in tears they wonder if their second child will develop this problem too. Fortunately at this stage it is not contagious and he can be allowed to play with his sister. He has been asking for his sister continuously in the past 3 days of admission. Mother requests us to please ensure this doesn’t happen to any other child and spread the awareness so that foolish people don’t skip vaccine due to false information on autism and many others. We said we would do our best and discharge them.
10 yrs old child was admitted under PICU team for respiratory infection and on follow up they felt there was something neurologically wrong with the child and referred to us. His sister had died of recurrent infections at 7 yrs and was told to have immunodeficiency. This child was tested at the time and told to have normal immunity. But he started developing recurrent infections at 4yrs of age and parents blamed his weakness to his infections. It took one hour to elicit the correct history of how his weakness started and progressed over time as they have no clue that he was not lying down due to weakness from infection or malnutrition but from nerves becoming weak. While I take history and gather information and start to understand what happened to child, I start noticing the tell tale evidence of the disease. I realized I have the hard task of telling the parents that this child is also going to die, their only live child. Mother asks if it was because of marrying in the family. I tried to make her guilt free by saying that it can occur even if one is not married in relation and she should not hold on to something that cannot be undone. She vents out her anger as her husband blames her for marrying him. Unable to comment on family dynamics I continue to confirm my diagnosis by examining the child in detail. They had already sent genetic test for evaluating immunodeficiency and had spent fortune in his endless treatment till now. I discussed with my consultant and decided not to do any tests and just update the genetic lab on the information and to look for this particular gene. This child had ataxia telengiectasia. These children have progressive weakness of nerve cells and immunity problems causing recurrent infections and become bed bound by 12 yrs and die due to infections in their second decade. Though infections can be prevented we cannot do anything about his weakness. I explain the parents the inevitable and write few medications to alleviate symptoms to a little extent while parents stare at me vacantly in despair.
1yr old child had neck stiffness which started 15 days back followed by weakness of left upper limb followed by right upper limb and then stopped walking. Grandmother blames mother for doing massage and has the diagnosis made that it has caused all the problems. I already knew this needs to be handled urgently before she starts having breathing problems. I examine and confirm that child has a problem in her spinal cord at neck region and she will need urgent surgery. Parents were clueless regarding the gravity of situation. After discussing with my consultant I arrange for an urgent MRI. Unfortunately as it was late in the evening MRI could only be done next day morning as child will not cooperate and will need anesthesia. We explained to the parents why they cannot go home for night and there is a high possibility that child will require surgery at earliest. MRI is finally done and we neurology fellows stare at it with amusement. We had not seen this kind of lesion before. This was not what we expected. For a while we forgot father is standing behind us and started describing the lesion with great enthusiasm and try to predict what type of lesion it is. Then I realize and curb everyone from discussing. What we realized was that this lesion probably cannot be operated. It is tumor growing inside the spinal cord. It was not a tumor growing outside the spinal cord and compressing it, which is what we expected. How can they remove tumor without touching spinal cord. If they touch spinal cord she will be paralyzed below neck for life. We tell the father we need to discuss it with surgeon before we can say anything. It is a tumor and we shall discuss with our consultant and surgeon and oncologist and get back to them with a plan of action. Neurosurgeon explains to them that we will take a biopsy and will try to resect tumor if possible without touching spinal cord. I was wondering in my head what will he resect? I concluded in my head he is going to come out without resecting. He also explained them that as the disease progressed very quickly it might be highly malignant. We can confirm that only after the biopsy. If it is highly malignant child may not survive this disease. I watch as a full grown man cries uncontrollably. Helplessly watch every family member absorb the news. While I do that I asked the surgeon that I would like to attend surgery to see SSEP( a test that will tell the surgeon that if he cuts that part child will loose that hand or leg function) guided resection. I was excited, I wanted to see that for a longtime. So many things go through your head at a time! Then a crowd of 10 members appeared for re-explanation in front of me. I weigh each word I understood from previous discussion and explain them the possibilities. As the discussion progressed over half an hour I was starting to realize they might give up on this child. I panic in my head if I said something wrong, am I taking away a chance of living for this child. I try to infuse hope while maintaining that there are chances of death. At the end of discussion I am emotionally exhausted wondering what I have done. I could not sleep through the night as I got the news late night that they were refusing surgery. After putting my daughter to sleep I frantically start reading everything about cervical cord tumors. Rechecking and verifying the prognosis, while reassuring myself that I still have a boss who can undo all the damage I could have possibly done. These tumors can actually be resected but not completely. Completeness of resection depends on type of tumor. I start reading radiology on how to differentiate these tumors though radiologist had already given the report. I wanted to be sure that it is that and nothing else. It was most likely astrocytoma and cannot be resected completely. It will be partial resection which will cause recurrence. Radiotherapy is best second line option but cannot give at this age as it will cause more damage than good. Chemotherapy has variable outcome. The data says 30% survival at 5 years. My oncology fellow says 30% is huge and we should do everything. My consultant asks me what is the quality of life? There is a grading system for functional activity level and how it improves with surgery and chemotherapy. It is a statistical prediction of dynamic nervous system. If she is currently not walking there is a 30% percent chance that she may walk with support while her hands may not recover. What would you advise this parents? Should they do everything or should they give up? The treating doctor can tilt the direction of parents thoughts significantly. But the ideal thing is to provide the cumbersome curves and graphs in simple terms and let them decide their and their child’s future. They took two days probably taking 2nd and 3rd opinions and finally refused treatment and got discharged. I stopped wondering if I did the right thing after reading up but still wonder how would things be if they chose the other path.
Telling parents that their child would die is not a simple task. In the first case I had to read up to tell them why their child is affected even though he was vaccinated. In the second child I had to be sure with out any tests that my diagnosis was correct as my consultant was not going to see the child, I had to rely on my diagnosis. A hundred things run through my head. Though I confidently delivered his death sentence I went back and kept reading wondering if I missed something treatable. May be because of the delay in treatment he will have life long deficits. I have probably put the parents in unnecessary agony. May be it was all infections causing malnutrition and vitamin deficiency leading to this. Missing a treatable condition remains with you forever. My consultant keeps telling about the treatable cause he missed. Every time a similar case comes the story would play in your head. Only if I had known or thought of it early. While patients curse you and blame you of money minded for doing multiple tests, we spend sleepless nights wondering if we have done enough. Years of training and experience go into minimizing the patient costs and maximizing the output.
Deviating a little from the topic but very relevant here. With the rising blame game and law suits doctors resort to practicing defensive medicine and do all tests to make sure they can prove in court of law that they did everything. Who suffers from this? Patients. Then who do they blame for suffering? Doctors! It is a vicious cycle of lack of trust in each other. Patient does not trust his doctor, nor can a doctor trust his patient. Trust is becoming a rare thing in people. People forget that they are mere humans, doctor is also a mere human. There is a vast universe with or with out god which has its rules and laws which no one can break. Somethings will happen in a certain way and there is nothing anyone can do about it. Salt will taste salty and you cannot change that what ever you do. If you are bound to die you will die what may happen. Stop venting your anger on others. Suffering is no excuse to any kind of aggressive behavior. But I should tell that this lack of trust is probably 40% while we still have 60% people trusting what we are doing. I hope people change their ways on to less destructive side as time passes and not the other way. I shall continue to learn and practice by the principles of kindness and accountability and responsibility I have been taught in my training. I will try my best to not be paranoid about my patients and do everything in my power to prevent myself from practicing defensive medicine where not needed. The almighty shall give me the clarity and magical power of knowing as to who needs defensive medicine!
Life's Diary 