The Surgical Caregiver

There’s a need to ‘recognise, celebrate and salute’ the untiring job of caregiving, which has become doubly challenging in the pandemic.

What would happen were your life to completely turn around in a day? The unexpected and heart-breaking loss of a loved one, the impulsive conception of a baby, the fortuitous reunion with an adopted twin, the unanticipated life-imprisonment for a crime not committed, the prodigious inheritance of an undeserved fortune or the startling loss of all your material possessions, an acid attack or an awakening, the loss of sight or deeper insight… would we be ready if any of these were to happen to us?

A few years ago, my cousin delivered a gorgeous cherubic baby boy. Ours is a family of over a hundred people, so there is no such thing as a contained celebration; the hospital security found it hard to regulate visitors. And then we were given unnerving news. On day 4, just as they were to return home, the baby was observed as having some unusually brief jerky movements in his limbs. He began blinking his eyes unconventionally. His mother knew instantly that something was amiss, and an astute neurologist recognized these to be seizures, or, as we understand them, epileptic fits. An EEG confirmed the diagnosis and an MRI done at one week of life showed an abnormality over the right half of his brain.

“We have to start him on anticonvulsants, and if the seizures cannot be controlled, we might even have to operate to disconnect the abnormal focus from firing,” the neurologist proclaimed. We brought him home on a plethora of medication. “We can’t operate until the child weighs at least 5 kg and is about 3 months old,” I cautioned. “It’s too risky, as this surgery involves some blood loss, and if we can’t replace it, we might lose him,” I concluded, seeing him twitch in front of our eyes. It happened 40-50 times a day, each time damaging a little more of his precious brain.

She gave up a flourishing career to focus on him. She overdosed him on her breast milk so that he would put on the weight required to withstand surgery. She fed him his medication like clockwork. While the phones of other parents are filled with giggling kids, hers was brimming with variations of seizure activity to send to the neurologist so as to adjust his medication. We huddled as a family, consulted with doctors across the globe, discussed his case at various epilepsy meetings, and finally flew down to a centre of excellence in South India for the operation.

“It was overwhelming to see this baby of mine come out of the operating room with a huge scar across his head, and drains and pipes sticking out from every orifice of his body, but the greatest blessing has been that he’s been seizure free since surgery,” she said with a smile that never left her through her stoicism.

They brought him home a month later, but the real work of paddling her canoe upstream had just begun. It was time to get him up to speed with the cognitive development that the seizure activity had taken away thus far. Every single day for the last three years, it has been a routine. She sleeps past midnight and wakes up at 6 AM, cooks his food herself, then wakes him up, brushes his teeth, gives him a shower with a loofah to provide adequate tactile sensory input, gives him towel compressions, and then does a series of vestibular exercises to zone him in. After some breakfast, they go to the terrace to get some sun and indulge in physical play, which, after a few years of diligent work, now includes football, learning how to cycle, running, and crossing obstacles.

Before the pandemic she used to take him to the physiotherapist and occupational therapist 5 days a week, to the speech therapist once a week and do a follow up of all the therapies at home post the sessions. However, thanks to the lockdown its all shut and she’s turned into all the therapists herself learning the do’s and dont’s from each of them and then teaching them to her son.  There are daily vision, oro-motor, sensory exercises to be done. And in all of this she still has to ensure he gets his medication on time.

Evenings is usually sibling play with actions, song, and dance. “I cook, clean, and take care of all my other stuff whenever he’s napping,” she says without sounding exasperated. “And I couldn’t do any of this without the support of my husband and everyone else at home,” she smiled, giving him a huge whack on his back while talking to me. “I’m filled with joy to see our son do the things we always wondered how he’d ever do… and he completes our family in the most unique way.”

While the centre of every illness is the patient, we often tend to neglect the immediate caregiver. We ignore their struggles, assume their resilience, and never pause to ask them how they are doing. We have no idea what they think about in their quiet moments, what their fears and insecurities are. It’s unfair to believe that they don’t need to be fortified no matter how tough they appear. We need to ensure that their cup is always full; only then can it overflow. There is a caregiver in almost every other home of e

very street in every corner of the world who is looking after a child or an adult with the resoluteness of helping them get better. We need to recognize, celebrate, and salute them.

A couple of weeks ago, she phoned me. “Madzu,” as she fondly calls me,” I’ve been having fever and a sore throat for two days, what do I do?” “Get tested for COVID,” I reflexively retorted. “But who’ll take care of my son? I can’t afford to fall sick for a single day.”

“This is your chance to get a vacation. Take some time off, get some rest; you really need it. There are four others in the house and they’ll manage at least half of what you do; it’ll be okay. Go, put your feet up!”

The test result came back positive and she gleefully retreated into her room for a 2-week break after being on duty for 3 straight years. We talked about the music she would listen to, the movies she’d watch, the yoga and meditation she’d indulge in, how she could light some incensed candles and order gourmet food.

On day 2 of quarantine, she called again. “Madzu, everyone else in the house including my son also has fever – and everyone’s tested positive. Vacation over!” she hung up playfully. She was back to tending to her husband, schooling her daughter, caring for her son, and feeding her parents, all without any remorse and with the same fervour and zest I’ve always seen in her. She lives up to Maya Angelou’s famous words: “You may encounter many defeats, but you must not be defeated.”

34 Comments on “The Surgical Caregiver
  • Dr. gurudutt Satyendranath bhat says:

    What a superb story.Same was the story of my aunt who took care of my cousin for over 3 decades till his passing.Incidentally he had an inoperable neurosurgical condition at birth.I have seen her struggles first hand and my hats off to every mother in the world who does this.

  • Chanda says:

    Dear Doc,
    This time you’ve touched the heartstrings which may have not been played for some time. Yes, very true, you have surely evoked the emotions one has whilst caring for the less fortunate. Your well worded article certainly overflows the cup holding salutations to the caregivers.

  • Vipul Shah says:

    My dear Mazda Sir ……..

    Firstly heartfelt Thanksgiving to you for your kind & prompt advice professionally to us 24X7…

    Extremely happy to read sacrifices by your cousin’s Wife to take care of New born baby boy ……

    Praying for well being of Child & Speedy recovery……
    God bless you & your Family of 100 + ( Great No’s !! )

  • Zarine Pastakia says:

    What a coincidence. . Maya Angelou’s words raised my spirits yesterday. .

    Just like moons and suns
    With the certainty of tides
    Just like hopes springing high
    Still I’ll rise

    Typical me – started at the wrong end😀

    Hi Dr Madzu .. thank you ! Another Sabbath gift that rings so true!
    A hug of gratitude for sharing this wondrous heartwarming, soul soaring story – blessings to your cousin, her lil one et al !

    Some years ago i remember how a caretaker bestowed her ceaseless affections on a mother-of-two beauty turned into a beast bag of bones – a mere vegetable existence for which she was totally dependent on the hospital staff. Let’s call her Lady Oblivion.

    Her mother – a mix of fury at the heartbreaking injustice and inconsolable sorrow – was at her only child’s pathetic bedside everyday when from nowhere flitted in this Angel who went beyond the mere paid call of private caretaker duty. Angel would talk incessantly to Lady Oblivion with adorable cooing sounds and lilting laughter that radiated love to all around, she would clean, wash, feed her, pinch her gaunt cheeks as if Lady O was her very own womb-child.

    Angel’s entry into that hospital room each morning was a delightfilled treat sunbeaming all around. She hugged Lady O then knelt on a mat at Lady O’s head to offer fervent faith-laced prayers to her beloved Lord. She would buy coloured hairclips and lovingly tend to and show off Lady O’s coiffure with maternal pride.

    And oft would Lady O’s face respond, breaking into sudden involuntary smiles, a light momentarily kindling her vacant optic orbs. Angel was a healing force for us all!

    She ministered her affections and motherly care till the day Lady O bid an unwilling adieu to us all. But for Angel .. that was not the end of the caretaking road.. she now transferred her healing energies with sunshine home visits to Lady O’s mother. In fact she keeps in touch with all of us. She now looks after a lady whose home, health and life are blessed by Angel’s love and care.

    And yes .. we would celebrate Angel’s Leo-sunshine birthday each year at the hospital. . And daily express our gratitude to her in thoughtful word or deed. It has to be a two-way street.

    So .. .. here’s to all the Care Bear Caretakers pouring their love, zest-blessed dedication, vim n vigour neverending into their protégés!
    May their tribe increase!

    And thank you Dr Madzu – the same tribal benediction be ever conferred upon thee too !

  • Kerzina Madon says:

    To our amazing sister and and even amazing you for this appreciation and acknowledgement that is so important. This has to be the best article I’ve ever read (extreme and certainly biased), after all it features two of my most most most favourite humans in the family and otherwise. Thank you Madzu for this, makes me so greatful for all that I am blessed with.

  • Priyadarshan Pradhan says:

    Thank you doctor saheb for bringing to light a neglected section of our society

  • Dr Indu Bansal says:

    U truly touched the chord by igniting the topic of caregivers. They truly deserve attention and gratitude and society must acknowledge their sacrifice. Another marvellous piece from ur pen.

  • Leah G. says:

    Deeply insightful, deeply compassionate and beautifully written as usual Dr Mazda! Thank you for these articles that I look forward! You are indeed, a beautiful gift to this world.

    Be thou blessed and take good care good doctor!

  • Freny says:

    Beautiful story of a Mother’s ceaseless love for her child. May the divine Bless both with Good Health & Happiness. Similar incident happened with my daughter. She delivered a baby girl who was prematurely born at 27 weeks at 750 gms ( in NICU for 120 days in the hospital) and both the parents tirelessly helped the child grow into a beautiful girl now 13 years old. They too had lots of hospital visits but never gave up.
    Please continue to enlighten us with heartwarming stories.
    God Bless you n yours always!

  • Avinash Karnik says:

    Hats off to her for doing her duties diligently and that too for three continuous years. Hope he gets alright soon so that she gets the deserved respite and take real good and long holiday.
    Stay blessed.

  • Anjali Patki says:

    An extremely Sensitive and touching story…as for the covid angle…I’m sure so many can identify with it. Excellent work 👍

  • Sanjay Gala says:

    That’s mother’s love
    Incomparable gift of life

  • Azmin Vania says:

    Maz, only and only you could be sensitive to so many things happening around you! My aunt took care of her 16 year old son with challenging growth with the same zeal every single day until he passed away many years ago! She always welcomed guests, had a smile and kept to his schedule all of it at the same time! It’s commendable how strong we can be in the most trying times.

    You may be a neurosurgeon with a special degree in matters of the ‘heart.’

    May there be many more like you!

  • N H Tandon says:

    After all the good work done by the treating Doctors, such selfless commitment and wholehearted dedication
    by this mother assisted by her family was so crucial to achieve the desired results …congratulations to both, the medical team and the spirited Mom for her Faith and Hope!!

  • Dr. Vishnu Mulchandani says:

    He who has health has hope and he who has hope has everything

  • Dr. Arvind Vartak says:

    Hats off to the mother.
    And of course, you too Mazda 💐

  • Tasneem Khorakiwala says:

    Amazing work by the Mum
    Her resilience and spirit is admirable. 🤩🤩

  • Khooshi Vikas Ahuja says:

    I do agree to it fully Mazda as she is an angel to the family I pray every day for her happiness and our little champ . I know 100/ he is going to get fine as he has got with him a super mom power of love .I always look to her as an example for being perfect she is the best.May be this will suit her east or west my big sister is the best. And Special thanks to u Mazda and Keki uncle for always being there for her at any time when she needs you’ll. Thanks once again to every those people who are with my sister my darling Kainz.

  • Pawan says:

    I know her really well and I have tears when I am reading this. She and her husband are inspiration. She has taught me to be positive no matter what life throws at you. But nothing close to how she deals her life. Just a very very proud friend. I am so glad she is part of my life.

  • Dr Salim lad says:

    Dr Salim lad.
    I will first thank my friend Dr Uday Ghate for sharing all these articles.
    It is always a pleasure to read these well worded articles.
    So insightful.

  • Gloria Msampha says:

    Taking care of a very sick child is never easy. It needs total love and dedication. God somehow gives us (women) strength to keep going. We never seem to get tired. Very glad the baby is ok.

  • Arun Pushkarna says:

    With every twist and turn you reveal yet another fascinating facet of your personality. Only those who feel these emotions can write with such depth and feeling.
    Mazda, you are a treasure!
    And your articles .. a treat!
    Never have I read any of your articles without undertaking a mental journey that leaves me wonderstruck

  • Sandeep Shah says:

    The care takers are special person sent on this earth. They are sent with gift of grit. God bless them all. My wife took care of my mother for 31 years after death of my father. She recently passed away peacefully. Was determined with breast cancer as our daughter was just about to get married. Managing work, home, family is not easy. And salute Dr Mazda for writing this topic so that everyone appreciates and acknowledge the role of caregivers.
    Thank you Dr Turel.


    What would not a Mother do or sacrifice to save her child from a illness. Very heart breaking to read this about your relative and her son. Hopefully with all this unconditionally love and physical care he will recover wholly and completely. Hope the family have all recovered from the Covid. God bless them and continue to give them the strength to move on in a positive way. 🙏🙏👏🏻👏🏻

  • Zubin Bhesadia says:

    Dearest Mazda,

    This is a fabulously penned write-up! The manner in which you portrayed the sequence of events, I could visualize each scene occuring during the smooth frame-by-frame narration.

    I pray that the dear young lad is doing safe & well & that he is making good progress in terms of his cognitive abilities & physical movements. I’m sure that with such a committed mother by his side & a gem of an uncle-cum-pro like you, he is destined to make rapid progress.

    While huge impetus is given to science, medical practioners & specialized facilities as the determing factors of the success rate of post-surgical progress, a powerful force that silently works behind the scenes is that of a dedicated family member (in this case, the mother) who sacrifices ones career, juggles multiple activities & relentlessly strives to ensure that both – the operated family member (in this case, the young lad) & the family at large are tended to equally…even if it means not having the time to tend to personal needs & hobbies.

    It is this dedication that paves way for the multi-fold recovery & speedy progress of the operated family member. While the combination of experienced doctors, precisioned surgical processes, wonder medications & specialized units ensure the control &/or eradication of the illness, it is the eternal love, personalized care & complete support from the family that adds to the magic quotient of recovery & progress.

    Such are the wonderful stories & examples that should inspire others to do just the same; not only for their family members, but also for the society at large.

    My best wishes to you & the family, your young nephew & his mom…& ofcourse, to your team of the surgical geniuses.

    Take care, stay safe & be well. God bless.

  • Mrs Sunaina Naresh Saraf says:

    Hello sir

    So true we need to salute & appreciate the tiring work of a care-taker
    Its because of them & their untiring work others are able to rest at peace
    But very sad noone appreciate them
    A very truthful inncident narrated beautifully

    Mrs Saraf

  • Rita singh says:

    Very true and touchy story.The way u narrate ur stories always seem as interesting as fiction.Hope and wish ur nephew good health.

  • Kashmera Marfatia says:

    Beautifully and heartwarmingly penned as always Mazda! Kudos to your cousin and all others who are selfless, cheerful care-givers. God bless them and the cared for and all others!

  • Bikram says:

    “We need to ensure that their cup is always full; only then can it overflow.”

  • Binaifer Aspi Daruwala says:

    👌👌 very heartwarming story. True example of a mother’s tenacity, strength and resilience to face the tough situation and come out victorious. BRAVO to Dr. Mazda 👏👏

  • Nergish Madan says:

    Too touching

  • Di says:

    A Heart warming article… apologizes for this late comment as i have been busy… hats off to all the amazing selfless caregivers! So very very true… caregivers must be given love, support, credit for their work and gratitude. They are angels amongst us and one of the angels at home is my sister who had taken care of mom and is now looking after dad 🙂

  • T George Koshy says:

    Mazda..that lady really has a heart of is the child now?

  • Vinod Ahuja says:

    Simply outstanding. It’s rightly said God could not be everywhere so he made mothers .


Leave a reply

Your email address will not be published. Required fields are marked *