One woman’s touching and riveting tale of the ground-breaking procedure her child almost went through

“I’m so sorry I haven’t come back to see you in months,” Fionna told me with a weary look on her face. “My back is doing much better with the physiotherapy, but the pain going down the leg is worse,” she drew a line with her little finger to explain where her sciatica spread. “What have you been doing recently that’s aggravating it?” I asked to identify some triggers, like therapists do. “I’ve had the most physically and emotionally draining 12 weeks of my life,” her eyes welled up. I handed her a tissue and asked if she’d like to talk about it.

“It’s my daughter Zoey.” she began. “She’s 10 years old and the love of my life. She’s curious, intelligent, kind, and has the gentlest heart,” she described. When someone starts with a description like that, it immediately tells me that Zoey’s facing something she doesn’t deserve. “I noticed a little discoloration on her belly and also found a small lump, measuring around 2 cm,” Fionna said, sizing it up with her index finger and thumb. They waited a week, but as it didn’t go, they took her to a skin doctor. “This will have to come out, but we’ll have to do it under general anaesthesia,” he told them, concerned that it could be a malignancy. “It’s rough and firm and doesn’t look like something we can ignore,” he cautioned. He asked for a bunch of tests that are routinely performed before an operation and scheduled surgery within a few days.

“The ECG and 2D echo showed up a cardiac anomaly in Zoey,” she continued. “She was diagnosed with a degenerative mitral valve, where the heart valve thickens and prolapses and doesn’t close properly, causing it to leak,” she explained. “But this doesn’t happen in kids,” I stated. “That’s what I thought too,” Fionna retorted, “but the doctors say there is a variety that affects the young; it’s super rare and it needed to be fixed at the earliest.” The family was shocked that their happy-go-lucky, always ready for an adventure, full of energy, merrily running up and down the stairs 5 times a day child could have heart disease requiring major surgery. “She had absolutely no symptoms,” Fionna said in utter disbelief. A consultation with the cardiologist ascertained that without surgery, there would be a certain decline in her heart health, affecting quality and longevity of life. The procedure involved fitting a custom-made clip device in the apex of the affected heart. “However, the surgeon had only performed this procedure aboard, as the technology was just a year old and hadn’t come to India yet,” she explained, adding layers to her story to which I was completely glued.

“And in all this drama of getting tests and consultations, the lump on her belly completely disappeared!” she exclaimed. “I don’t know if this was providence or the devil in disguise, to be honest,” she confided. “But you couldn’t escape the heart condition?” I asked, eager to know if they had decided to go ahead with surgery for the little one. “She was put on oral heart medication until the doctor ordered the custom-made clip from Shanghai, as they planned to operate in this way in India for the first time,” she continued with a story that was getting more complex. While waiting the four weeks for the clip to arrive, Fionna told me that her heart and mind were riddled with a multitude of thoughts on whether they were doing the right thing for Zoey, whereas Zoey was blissfully unaware of what was going on. The entire family was sombre and anxious. “I held her closer as she slept, woke up several times at night to just watch her, putting my hand on her little heart, and kissed her and cuddled her even more than usual. We took her for late-night car drives and gave her her favourite scoop of ice cream more often. And I prayed… prayed hard and from my heart,” she gestured with hands folded. I was beginning to guess that the story was going to have a happy ending.

“On the day of the operation, with all our hearts weighing a tonne, Zoey was wheeled into the operating room,” she told me. The surgeon said it would take three hours and smiled to reassure us, saying that it would be perfect. “Get out of here, have some breakfast, and come back,” he told us. “But I stayed glued to the chair outside the OR,” she said. “Two hours passed, three hours passed, then four hours, and my heart was beginning to tremble. Just then, the doctor burst into the waiting area,” she said with a quiver in her voice. “He pulled down his surgical mask and I could see his lips pursed tightly into a frown. Softly, he said, ‘We were about to implant the clip when Zoey’s blood pressure plummeted to dangerous levels. Her oxygen saturation also dropped to 64. We tried to stabilize her as best we could, and the levels would rise but only to crash once again. We decided that under the circumstances, to continue with the procedure would mean putting her life in jeopardy. We aborted the procedure and have closed her up. We are doing all we can to stabilize her, but she is critical,” he breathed out deeply.

Fionna said she sat outside with her sister and children, their hands entwined in each other’s, saying the Lord’s prayer like a litany. “He came out again after what seemed like an eternity to tell us that Zoey was stable. She would be on a ventilator overnight, and they hoped to remove the breathing tube the next morning. When she came out of the operating theatre and was wheeled into the ICU, she had pipes and wires sticking out everywhere,” she spoke of the experience. “However, with the grace of God, over the next few days she was discharged from the hospital, alive and well,” she breathed.

Fionna acknowledged that while the surgery would have set a record since it was the first one of its kind to be performed in India, the doctors showed courage and compassion to take the call to abort it.

“What about the heart now?” I was curious. “She has to be on cardiac medication for life. If she develops symptoms, we might have to try out the procedure again, later, the doctors told us.” The things parents have to go through for their children, I thought.

“Perhaps now that everything’s well, you guys can take a short summer vacation before she starts school again,” I suggested. “School? What school?” she looked at me perplexed. “Zoey’s my beloved 10-year-old black and tan dachshund!” she exclaimed.

This time, it felt like my mitral valve had suddenly prolapsed.

Someone’s life can change from happy to tragic in a single moment. Sometimes, the doctor shoulders the responsibility of reversing this.

“I just got back from my pre-wedding shoot in Dubai last evening and I was perfectly fine. It was such a fabulous experience. The entire family went for dinner after that and we had a great time there too,” she recalled as she spoke to me lying on a hospital bed 12 hours after having the best time of her life.

“And then what happened?” I prompted her to continue. “I woke up this morning with severe back pain, and realized I just couldn’t move my legs,” she said, her face turning from a rosy pink to an ashen grey. “Then, I vomited twice, and with each vomit, I felt like I had lost sensation: first in the ankle and then at the knee and hips. It’s been several hours now, and I can’t feel anything waist downwards. My hands are absolutely fine,” she finished, flicking back her professionally done-up hair over a face that still had remnants of her photoshoot make-up. I asked her to move her legs, and nothing. Zero. I gently walked a needle, poking it from her thighs to her toes to ascertain if she could sense the prick of a pin, and again, nothing.

Her physician had ordered an MRI of the spine and expeditiously sent her to me. I plugged the films against the scintillant light of the scan viewer as the anguished family waited for me to pronounce my verdict. “There is a thick blood clot compressing the spinal cord at T-11, which has caused her to become paraplegic,” I said, pointing to the eleventh thoracic vertebra. “There could be an underlying tumour or a vascular malformation, but that is secondary. It has to come out at the earliest,” I decreed. “It’s choking the cord in full throttle. Time is of key essence in this. We should do it now.”

“Will she be able to move her legs?” the forlorn father asked, the anatomy of illness intersecting with the geometry of grief in his heart. “That’s the reason for rushing this,” I responded. “The faster we decompress the cord, the better her chances of recovery – but how soon she gets better is anyone’s guess. It could be a few days, it could be several months. There are a few patients who won’t improve despite our trying everything. “She was supposed to get married in 3 weeks!” the mother burst into a cloud of tears, sobbing uncontrollably.

“Her fiance is in another city and would like to speak with you,” said the brother, handing me the phone. “Doctor saab, tell me honestly: what are we dealing with here?” he asked. I wondered if he enquired with a subconscious trepidation of having committed his entire life to someone who might not be what he had imagined, if he sounded like he was ready to back out of the contract, until I quickly realized I was being judgmental without reason.

I explained the reality of the situation to him while the operation theatre was being spruced up for her. “Do your best, doctor. I love her very much,” he entreated, trying to navigate the trifecta of sadness, uncertainty, and hope from a distance as he hung up.

It was 6 PM. I had already operated on two cases that day and realized I hadn’t eaten a morsel yet. As the team prepped her for surgery, I decided to step out to the Udupi restaurant across the street to grab a quick bite. As I ate my idli sambhar, it dawned on me that this was the first time I was eating in a restaurant since the start of the pandemic. The food was gastronomically gorgeous. I was so focused on thinking about the case that as a force of habit from eating food only at home for over a year, I picked up my plate and walked towards the kitchen till the waiter politely stopped me mid-way and took over. The lockdown has really rewired our brains, I thought to myself.

In the operation room, after the induction of general anaesthesia, we flipped her on her back and cleaned and draped her in the usual fashion, but with an added and intense swiftness. I cut down the middle of her back to get to the bone, which I drilled off with intention and urgency as my assistant irrigated the field to dissolve the bone dust. Once we removed the bone, we saw the thick blood clot sitting there stubbornly, stuck to the covering of the spinal cord. We gently scooped it out, giving the spinal cord its desired space and respect. We did not find an underlying lesion from which it had bled. After having satisfactorily decompressed the cord, we closed.

A few hours after surgery, we checked to see if she had regained any function. Nothing. Perhaps just a flicker of the toe and that too if you imagined it hard enough. “Let’s wait and see what happens tomorrow,” I spoke with the despondent family, and called it a day.

On my drive back home, close to midnight, I reflected on the famous adage of how someone’s life can change in a day or even in a single moment. What must one go through in their mind when out of the blue they realize they can’t move their legs? Often, the cause is a viral affliction of the spinal cord called transverse myelitis, or an autoimmune condition affecting the nerves that supply the legs. In some rare cases, when the potassium level drops, it can lead to a condition called hypokalemic periodic paralysis, and gulping coconut juice can reverse the problem.

The next morning, when I went to see her, she waved at me with her ankles. There seemed to be a glimmer of hope. Two days later, she could bend her knees and hips. On day 5, she could stand with a walker. When she started walking a week later, she said she felt the ground differently than before, but her sensations seemed to return gradually. She was discharged ten days after surgery, walking independently, which is how she decided to leave the hospital. A spinal angiogram did not determine the source of her bleed. She had regained bowel and bladder function and exercised vehemently to strengthen her core, hamstrings, and quads. She was determined not to postpone her big day.

I’m going to the wedding next week. I’m glad she got her shot at her happily ever after, forever.

A man of science must surrender to strength of will and power of positive realisation if he is to be an effective doctor free of ego 

RAHUL had a fall while horse-riding on his honeymoon. He was paralyzed below the waist after the injury. He felt no sensation in his legs, and had lost bowel and bladder control. He had sustained a fracture of his seventh thoracic vertebra with an almost complete transection of his spinal cord. He was air-lifted and transferred to our hospital within a few hours of the accident. His wife narrated between sobs what had transpired, and a quick look at the patient history and detailed examination later, I knew what we were dealing with.

“We will have to fix the fracture with a few screws and rods and relieve the compression from the spinal cord, but I haven’t seen anyone with an injury of this nature being able to walk again. The purpose of stabilization of the spine is purely so that you may undergo extensive rehabilitation later,” I concluded, asphyxiating hope at the very beginning.

I don’t know if I was being a blunt jerk, but knowing what we know, I’m often conflicted about what is the right thing to say or do when I know the chances of recovery are next to negligible. This was akin to the well-documented case of Christopher Reeve, acclaimed for playing Superman, who was reduced to being a quadriplegic after he was thrown off a horse during an equestrian competition. He needed a wheelchair and portable ventilator to breathe for the rest of his life.

I attempted to soften the blow. “The good news is that the location of your injury is such that your arms and breathing are spared.”

“What about injecting stem cells into the spine during surgery?” he asked, his eyes welling up. Only 34, he had just been handed over the reins of his father’s business of manufacturing bottle caps. That research was in its nascent stage with no real proven benefit yet in a randomized control trial, I told him.

We went ahead and relieved the pressure from his spinal cord, removing a sharp spike of bone wedged into it and realigning the deformity with lots of metal. The surgery went off perfectly, but as expected, barring a flicker of movement, there was no improvement in the power or sensation in his legs. When it was time to get discharged, he once again pleaded, “Will I ever be able to walk again?” Most surgeons brush off a definitely negative response with “let’s hope for the best, “fingers crossed,” or “God willing”; in our country, the last one gets us out of difficult questions with ease and even panache. In contrast to all the responses I could have relied on, with a straight face betraying no emotion, I said, “I doubt it” with unvarnished honesty. There is a fine line between false hope and audacious optimism, I thought, remembering all the cases of severe traumatic spinal cord injury I had operated on over the years.

Moving closer home, my uncle was diagnosed years ago with chronic leukaemia. Although it was under control with the help of oral chemotherapy, it recently relapsed fairly aggressively, transforming into an extremely rare variant. Most top doctors in India and the United States concluded that they had exhausted all options. As he was 73, palliation was the answer; a bone marrow transplant was certain to fail. The Americans suggested he enrol in a clinical trial with a very uncertain prognosis. He researched his condition extensively, learned of the latest developments in the field, and sent off a couple of hundred emails to various centres across the word, most of whom were unwilling to accept the futility of treating this condition, but he didn’t give up. Finally, he ended up in Israel and received a specialized tailored transplant that resulted in complete remission. “Every outlier represents an opportunity to refine our understanding of illness,” I remember reading somewhere.

Human beings faced with adversity are tenacious. Being resolute in overcoming insurmountable obstacles is what fuels the human spirit. We, as doctors, often don’t have an answer to many of the uncertainties we see; we tend to throw up our hands when things seem beyond our control. While scientifically documented advances through clinical trials are the sanctum sanctorum of medical progress, there is a growing body of evidence that by simply changing one’s perceptions, the human body can heal itself from disease. What the ancient spiritual leaders of our country practiced with promise, faith, and conviction, science will probably be able to prove soon. I am convinced that thoughts, belief, and emotion have a huge impact on our health and our ability to heal. Cancer survivors, stroke victims, and those who have miraculously recovered from physical, mental, or emotional trauma have travelled a deeply complex and personal journey of healing—small footsteps towards the infinite potential of the human mind.

A few weeks ago, a well-toned, perfectly healthy man who appeared to be in his late thirties walked into my office with his wife. The face looked familiar. “You don’t remember me, do you?” he smiled. “I’m Rahul,” he continued, turning around to lift his T-shirt and show me his scar. “I came back to prove you wrong!” I was in complete disbelief to see him walk unaided. He told me that three years of extensive rehabilitation, machine learning, aqua and music therapy, meditation, spiritual practices, and the power of visualization had helped him make this miraculous recovery. His one-point focus across this time had been to walk again, he said. “No one” I said, paraphrasing the Bible, “labours in vain.”

I realise that these people are exceptions to the rule. But they also remind us that there are no rules. They are the ones who make the word impossible seem like it’s just an opinion. They defy everything we’ve learned while studying to be doctors, all we know as scientific fact. And that’s why, they end up being the patients we admire and remember the most—because they teach us that the will to make a difference often makes the biggest difference.

Should the surgeon honour the sun, moon and devi or turn dispassionate and stick to protocol? The answer will be evident on a Saturday before sunrise.

We cannot get admitted on Thursday; Mataji no divas chhe,” Mrs Desai said, vociferously objecting on behalf of her husband, who had agreed to a surgery to alleviate the accumulation of fluid in his brain, a condition we call normal pressure hydrocephalus. In his case, the fluid-containing cavities or ventricles were enlarging in size, causing progressive imbalance while walking, urinary incontinence, and some degree of dementia.

The operation involved placing a thin silicone shunt tube into the ventricle of the brain, tunnelling it behind the ear and under the skin of the chest, and then inserting it into the abdomen to drain excess fluid.

“This is not an emergency. You can choose to get admitted any day you like and we will perform the surgery the day after—unless you have a preference for that as well!” I said in jest, not realising what was in store for me.

“Of course, sir. Saturday is a good day, but we will have to make the cut before sunrise.”

I explained the logistics of shift timings of the operating room personnel and reasoned with the couple that even if I were married to an anaesthetist, she would not arrive for surgery before dawn for a routine case. Most surgeries start at 8 am.

“Sir, we are followers of Mataji. Kindly adjust.”

“I will do my best,” I promised, as I directed them to the reception for the paper work.

“Sir, what brand of tube will you use?” he inquired.

I was expecting this question: patients like to hear the word “foreign” although Indian products are just as good. “Local, imported, no problem, sir. Just that the brand name should start with A, M, or K. These are Mataji’s names.”

Their smiles touched their ears when I said, “Medtronic Company.”

I try hard to accommodate a patient’s request, no matter how bizarre. It’s unnerving to operate on someone on a Tuesday knowing that this is the worst day in the week for them. On the other hand, there are some who will only get operated on a Tuesday. Of course, at the end of the day, belief determines their disposition, but what is expected of the surgeon? Should the surgeon heed inconsequential requests or stick to protocol? I’m not brave enough to be dispassionate.

A few months ago, as one of my patients was being wheeled in for surgery, his mother grew hysterical and asked for the operation not to proceed. No amount of reasoning could change her mind. The relatives shared that a “devi” had entered her “atma”, and instructed that the surgery be cancelled. We respectfully agreed, although the patient and the rest of the family had given their consent to proceed. He was operated elsewhere a few weeks later and suffered a devastating complication from surgery. It could have very well been on my hands, I reminded myself. The customer is always right, be it at a hotel or hospital.

Surgeons are superstitious too. Some don’t operate on a full moon day. Others don’t take emergency calls on amavas. A colleague always carries an evil eye pendant in his scrubs while operating. Another puts on the left glove first while scrubbing in. Some surgeons don’t indulge in sex the night before a major operation. I know of a few who turned vegetarian and gave up alcohol when a postoperative case that wasn’t faring well suddenly saw the patient improving.

Mr Desai finally did get operated on a Saturday before sunrise; I had to bribe my anaesthetist with an exotic breakfast after surgery. He made excellent recovery with significant improvement in his gait within a few days. Every morning, when I went to check on him, a gentle incense (although not allowed as per hospital rules) filled the room. Soft bhajans played in the background. His wife fasted the entire week, having only a glass of water in the mornings after visiting a temple.

On a Thursday, five days after surgery, I told the family that he could be discharged the next day. They were not thrilled. The Desais gestured that it was not a good day for them.

“But you got admitted on a Friday,” I said, groaning a little and exhausted by now.

“We can get admitted on a Friday, but not discharged. Please understand, sir.”