Enrapturing victory, success and joy…his name “Nihaal” embodies all that he stands for. His journey is a miracle that truly enraptures our heart and soul, leaving even the hardest nonbelievers with a faith that says there stands a power far greater than you and I are.Second year into their marriage, Nihaal’s parents were worried. They were hoping for a baby. The elders in the family like most ones in Indian families had started enquiring for the “good news”. A series of tests and visits to the gynecologist shattered their dreams. Nihaal’s mom, Navnita had severe tubal blocks in both tubes, surgical correction was tried but a spontaneous conception would be “impossible”, they were told. A natural pregnancy without assisted reproduction techniques would be a “miracle”.We have all heard fairytales and fables about miracles. Do they really happen? Aren’t they just figments of imagination handed down generations to reinforce a belief in a higher force? Here were miracles, not one but one after another that were to unfold in their lives. The first was Nihaal’s natural conception.Navnita’s happiness knew no bounds when she realized she was expecting her first baby, the ‘impossible” had happened. Nihaal came into this world bringing joy and ecstasy into their dejected hearts. A few weeks of blissful parenting and their joys were replaced by fears. Soon after birth Nihaal developed jaundice that refused to go away. Detailed evaluations in the 3rd month of his life revealed he had biliary atresia wherein the biliary system, a network of channels that drains bile produced in the liver to the gall bladder has blockages causing liver damage due to bile stasis.Over the next few months he developed progressive liver failure and was practically in and out of hospital. They were referred for a liver transplant, without one he didn’t stand a chance. His parents were devastated. They had thanked their stars for his birth, wondered what past good deeds had manifest this miracle into their lives. Was their faith in the Divine being tested? They couldn’t afford a liver transplant, they couldn’t afford to lose Nihaal either. Nihaal was too precious to be lost, their hearts bled at their predicament.Nihaal was too precious to this universe as well. Another miracle was about to unfold, a person unknown and unrelated to them was about to become his guardian angel. The transplant team had put in an appeal on national television seeking financial help. Herein, stepped in a person with a heart of gold, one who is revered by his fans for his cricketing skills, his wit and his down to earth persona. Navjot Singh Sidhu put in 18 lacs to cover for his surgery and the recurring lifetime cost of his medications without letting out a word for publicity. To give is great, to give silently is divine. The only bank that can never go bankrupt is the bank of selfless love.The hospital chose not to charge for the transplant apart from the six lacs to be spent on the consumables. The remaining twelve would be put into a fixed deposit and the interest pay for the monthly immunosuppression medications. Does this bring us to the end of the story? All hurdles sorted, successful surgery and happily ever after? Man proposes, God disposes. There was another miracle waiting to happen, one that would jeopardize all their plans, that seemed more of a setback than a blessing.All pretransplant assessments for Nihaal were complete. Navnita, his mother, being the same blood group as Nihaal was to be the liver donor. Her ultrasound abdomen done as part of assessment before surgery left her flabbergasted. She was in the 3rd month of another pregnancy, one that she was totally unaware of. She had been declared infertile at one point of time, and here she was with another pregnancy!She wept her heart out and steeled herself. She had to save Nihaal, and she contemplated an abortion. She asked to confirm how soon after an abortion could she go in for the donor surgery. Today, she credits the life of both her children to our team. We put our foot down, no abortion. She would not be the donor. There was no guarantee Nihaal would survive the liver transplant, was she prepared to live with the loss of both her children if Nihaal didn’t make it?As if the whole universe had conspired to bless them with a happy family, Nihaal had another guardian angel up his little sleeve. An aunt with Nihaal’s blood group showed great magnanimity and came forward to donate a part of her liver. After all these miracles, how could the miracle surgery that has revolutionized the course of this disease ever go wrong? All went well. Both Nihaal and his aunt recovered very well after their surgeries.Today, more than a decade after Nihaal’s transplant, with his younger brother in tow, they constitute one  blissful family. They have been truly blessed beyond their fondest dreams. They live in gratitude for providence has brought them their highest good for their greatest joy.Clinical perspectiveNihaal has had a miracle run in the clinical context as well. He had a smooth surgery and postoperative course. On follow up, he has done remarkably well with no late post transplant complications.

Lord Ram’s banishment to the woods had ended in 14 years, imprisonment sentences for even the severest of crimes end in 10 to 14 years. What had she done to deserve such a punishment? Samreen’s mother wondered. She had been married for almost 17 years and was yet to beget a child of her own. It is said that motherhood completes a woman and brings out the best in her. Would she ever experience it? She had suffered repeated miscarriages that had completely drained her body and soul. Pregnant again, she prayed fervently for the successful outcome of this pregnancy. But she had been praying for years and years, she had begun to ask herself – was there a God?The cry of her newborn baby seemed like a call from the heavens above to uphold her faith. She had never been happier! No sound sweeter! Her husband wept like a baby. They had finally become proud parents to a baby girl. They named their new born jewel, Samreen.Sadly, their joy was short lived. They had not even settled into their newfound roles, not even learnt to change the diapers properly that their visits to the hospitals began. Samreen had jaundice, and then began visits from one doctor to the other. At 5 months of age, she vomited blood and was hospitalized at Islamabad.  She was detected to have progressive familial intrahepatic cholestasis, a condition in which liver cells are less able to secrete a digestive fluid called bile. Build up of bile in the liver cells leads to liver failure.She would require regular medications, but there was no way to prevent her liver disease from progressing. She had developed portal hypertension and had repeated episodes of bleeding from her gut necessitating blood transfusions and endoscopies. Every bleeding episode was a potential threat to her life.Her parents were devastated. It seemed like a sword always dangled over their head. Her mother would go paranoid thinking she would bleed again. She was all but 3 years in age, what years of prayers had brought seemed to be slipping out of her hands. Questions plagued her mind, had she asked for something that was not meant for her? Was the joy of motherhood not destined for her? Is that why they were suffering? Could God be so ruthless?  She would go crazy with grief. Was a gift, a gift at all if it was to be snatched away so soon?  But Samreen was destiny’s child. She was meant to live. Her doctors in Pakistan advised her for a liver transplant. It was the her only hope. Her parents were terrified of such a major high risk surgery. They chose to put their trust in the Divine and came to India for a liver transplant.The surgery was a success and she recovered wonderfully. She did have postoperative infections that were treated well. She went home after about 5 weeks in hospital. Finally, life for Samreen and her parents had begun.The Clinical Perspective Post transplant Samreen developed chickenpox. She did receive prophylaxis but still suffered the infection. As all post transplant patients are on medications to suppress their immunity and chickenpox is highly contagious, an outbreak in the postsurgical unit would have been devastating. She was immediately isolated and all precautions taken.

“Ayubowan” – May you have the gift of long life! With this traditional Sri Lankan greeting Dhanundhara was welcomed to his place of birth by his grandparents. Just as this tear shaped island country is the sparkling jewel of the Indian Ocean, so was Dhanundhara the jewel of his family, doted by one and all.All of 3 years, he was too small to express in poetic language the natural beauty of his country. The magnificent coastline along azure seas lined with palm trees, sun drenched beaches, lush green jungles, cool refreshing hills had a magical effect on him – transforming him from the quiet reserved child that he was, to a chirpy kid squealing with joy at every new experience.His parents had migrated to UAE and it was his skin condition that had brought them on this trip. Dhanundhara suffered from vitiligo, a skin disease that causes white patches on the body. Full of its traditional heritage as their country was, they banked on an alternative medicine therapist to try and heal him with herbal medication. Sadly, it became the source of their nightmare.He had been on his herbal medications for a few weeks when he began to have fever and then vomitings and jaundice.  He had developed hepatitis, ie inflammation of the liver. His parents took him to back to Abu Dhabi for medical care but his condition progressively deteriorated. He had developed acute liver failure and was susceptible to life threatening bleeding or coma if his liver function continued to deteriorate any further. He needed an urgent liver transplant.Emergency contact with the team of liver specialists at Indraprastha Apollo Hospitals was made and he was flown to India. It was inferred from his clinical course and diagnostic workup that he had developed liver failure due to the herbal medications as all tests for an infective cause or underlying silent chronic liver disease were negative.Preparations were started and he was admitted to the intensive care unit. It was a herculean task to care for him. He would speak little and would resist blood tests with all his might. His long dark curly hair made the staff mistake him time and again for a girl, causing him to sulk further. Only his mother could understand his agitated state of mind behind his quiet persona that gave a false perception of tranquility. She was his magic charm and became his donor, giving him life twice.The transplant surgery was a success and he was off the ventilator within a few days. When all seemed fine, arose another problem. He would not accept his oral medicines. He hated them. He had always been averse to taking medicines, said his mother. He would just shut his mouth and require coercing for hours together, becoming agitated when forced. After undergoing a transplant one needs to take regular medications, to prevent the body from rejecting the new liver.  Am I going to struggle daily to administer them, wondered his mother. For a few days, his oral feeding tube was not removed after surgery so that he could be given his medications. The magic charm that his mother was, she gradually and loving brought him around and he slowly overcame his strong aversion to medicines.By the time of discharge, his syrups didn’t anger him, the needles and syringes didn’t terrify him. All he wanted was to go home to live the life he had been blessed with.The Clinical Perspective Acute liver failure is a grave medical emergency as the mortality risk is very high. An urgent liver transplant has to be arranged before the patient develops complications involving the brain, kidneys and other organs that would render a transplant unfeasible and/or futile. Dhanundhra had to be airlifted to our hospital from UAE at a very short notice. Meticulous preparations ensured he underwent a timely transplant.

The hospital cot was her cradle, the beeps of the monitors her rattle sounds, stethoscopes her toys, the doctors and nurses her family. For Vani, the hospital was her home. Her parents had forgotten the joys of youth, the gay abandon their age would warrant.  They had suddenly grown up, sobered and quietened by the burden and enormity of Vani’s illness. Nothing could have prepared them for the suffering they would go through together.Like all new parents, they had been overjoyed by Vani’s birth, she was God’s gift to them. Full of dreams to raise her as their princess, buying her frilly frocks and fancy pink clips, they brought her home. But only if yellow would give pink a chance….A few days after her birth, they noticed that she had yellow eyes and urine. Her stools were clay white. The idea of routine newborn jaundice that resolves in a few days was reassuring,  but they began to worry when she was still jaundiced well into her second month of life. Medical tests confirmed that she had biliary atresia. She needed urgent surgery and was operated at 57 days of life. Thus began her war with the disease.The cure that had been anticipated with her surgery was never to be. It only left her worse with repeated episodes of infection in her gut as it had been connected to her liver. She received multiple courses of antibiotics for the next few months. She would get a little better and be discharged from hospital, only to be back again in a week or so. This happened half a dozen times. Finally she was then brought to Indraprastha Apollo Hospital, Delhi, frail, emaciated and struggling for her life.She was put on ventilatory support as her blood grew deadly bacteria for which she was treated with heavy antibiotics. Thankfully, she responded well and her infection was controlled. But her doctors knew that her only chance for survival was to have a liver transplant. However, she weighed just 6 kgs, had been ill for what seemed forever, her liver had failed and infection would return any time.  They could not wait for her to gain weight and grow stronger for the surgery. This was the only window of opportunity. She was on top of her infection and a very high risk liver transplant was performed.Out went her diseased liver with all its hidden foci of infection and along with it her misfortune. Worst fears of her not coming out alive from the surgery were allayed when she was wheeled out of the operation theatre after the 12 daunting hours of surgery.  She was a fighter, she looked better as each day passed and the real Vani surfaced. Vani with white eyes, soft belly with no distension, kicking her way to good health. Within 3 weeks she was home, never to be hospitalised again in the 7 years that have elapsed after her transplant.Life had triumphed, had given her the joy of childhood in her parental home, with many more to grow up for. A pink wedding dress, perhaps?The Clinical Perspective Vani had been ill for too long, was very weak due to her chronic liver disease, repeated infections and prolonged hospitalization. This made her transplant very high risk and early complications like flare up of infection and vessel thrombosis were feared. However, she had a dramatic recovery after receiving the new healthy liver.

An unemployed alcoholic gives up drinking to become a liver donor for his son who in addition to a new liver gets back a responsible loving dad saved from doom that alcohol had led him to  The doctors measuring tape doubled up as a tailor’s tape for taking measurements for Vinay’s clothes. He was being discharged and his doctors, along with giving him a new liver, wanted to dress him up in new clothes. “Please don’t bring anything in red”, he whispered in his mother’s ear to convey to his doctor who was now off from the ward round to proceed for the mall round shopping for Vinay.Some people evoke sympathy, others evoke empathy. Vinay was one who evoked pure love and deep affection. He was too blessed to be sympathized with.  Despite his illness, there was never a moment where you could catch him awake without a smile on his face. Ever radiant, ever beaming, ever content, the gleam in his eyes never gave away his tale of suffering.All of 11 years, he had been in and out of hospitals multiple times over in the last 4 years. The first episode had occurred when he was barely 3 years of age. These repeated episodes of fever, jaundice, pain abdomen and vomitings brought him from a small village near Jalandhar to Ludhaina and then to the Post Graduate Institute of Medical Education and Research(PGIMER), Chandigarh in his quest for a cure. A diagnosis  of primary  sclerosing cholangitis was arrived at, a condition in which the draining channels for bile become beaded and narrowed leading to bile accumulation in the liver and subsequent tissue damage. With the non complaining temperament that he had, Vinay patiently endured 7  endoscopic attempts by his doctors to put in a stent across his main blockage. As a last resort, an external diversion was created that drained his bile into a bag attached with a tubing to his gall bladder.To live with a bag attached, liver already damaged and shrunken, no school, no play – was this to be Vinay’s fate? He deserved better and the universe ensured he got his due.He needed a liver transplant, that was his only chance of a life worth living. An alcoholic out of work father, 2 elder school going sisters, a mother who supported the family with her peon’s salary that barely made both ends meet…. Where were the means to salvage Vinay?His doctors needn’t have despaired. The entire universe had conspired to help Vinay. The liver transplant team at Indraprastha Apollo Hospital offered a free transplant in which the bed charges and fees would be waived off with the patient needing to pay only for medicines and consumables. That would cut the cost to about half (6 lacs), but that too was beyond their means. In true community spirit, his village was like an extended family and the panchayat took on the challenge to raise money. A public appeal was issued, several rounds of Kabaddi matches were organized to raise funds and sanctions were obtained from the Punjab Chief Minister’s relief fund. Rupees one lac each were donated by the kind parents of 2 patients.  Soon the required sum was in the kitty.With the funds arranged, evaluation of the mother as a donor was started. After all the positivity, no one was prepared for this setback – even though she had no symptoms, her main vessel supplying the liver was found to be blocked making her unfit to donate. Both the sisters were not yet adults. Tears rolled down her eyes as she foresaw all her efforts go down the drain.Little did she realize, God had grander plans for her. A new life awaited not only her son but also her husband whom this challenge reformed completely. To be able to donate a part of his liver, he would have to abstain from alcohol for at least 3 months. Post donor surgery, if that happened, alcohol would be taboo as it would harm his regenerating liver. Love for his son proved stronger than the love for alcohol. What years of coercing and pleading by his wife and children could not achieve, the desire to see his son live did. Not a drop of alcohol went down his throat in the next 3 months and he was then cleared as a donor by his surgeons.What could go wrong with Vinay after having surmounted odds of such gravity? All went well, Vinay went home looking dapper in his new clothes. He now goes to school, his father – now a teetotaler earns reasonably as a carpenter, his mother and sisters have never been happier and the village panchayat never felt prouder. From the greatest adversities emerge the greatest success stories, such are life’s ways!   Clinical perspective:Vinay and his family had suffered for almost 8 years due to his illness. Recurring at progressively decreasing intervals ever since he was three, for the last 4 years he had been ill every 2-3 months. By the time he was diagnosed, he already had portal hypertension. As stenting had failed despite repeated attempts, a cholecystostomy had been done that was an open channel for infection and also tended to block.Vinay’s liver transplant was a success- medically and socially. He became a model for other patients from the economically deprived strata of society, bridging them from despair to hope.

A child born of a precious pregnancy undergoes renal transplant due to kidney failure 2 years after a liver transplantDoctor! doctor! See! Sroy is dancing! He is hiding and peeping from behind the curtains! Look at him!…The sister was beaming with joy as she ran through the ward corridor to share the news. He was quick to capture the moment in a video on his mobile and the mother was in tears, this time, of happiness.Countless tears had she shed on countless occasions as she had struggled to save her only living child. Four miscarriages, a child lost in infancy to an undiagnosed illness, a broken marriage, all alone in a foreign land with a child ill from birth……the strongest of humans would break in such a predicament, but not this lady. Not this lady, for she had the strength that comes from love. One of the biggest joys in life is to love and be loved. Sroy was the  one to love her back and she would do all in her power to have him live.She first come to India from Cambodia when Sroy was about a year and a half. He had biliary atresia. Sroy had a corrective surgery at 2 months of age at Singapore but his liver functions continued to deteriorate. He had repeated episodes of jaundice with fever and when he began to vomit blood, he was advised for an urgent liver transplant. Fortunately, funds were not an issue. The family chose to come to Delhi.Sroy underwent a liver transplant and was discharged within 3 weeks. His liver functions improved rapidly and we sent home this little bundle of joy, his eyes sparkling with the hint of mischief, his laughter so infectious that the hospital gloom would be uplifted within seconds of being with him.But the troubles he was born with didn’t go away with his liver. After remaining well for about 20 months, Sroy developed swelling all over his body and was detected to have kidney dysfunction. He was back with us, his blood pressure was high and is normally cheery nature was drowned in his restlessness.Anxiety was writ large on the faces of the transplant team. Their worst fears were confirmed with the medical and kidney biopsy reports… Sroy had developed chronic renal disease due due to transplant associated thrombotic microangiopathy, a condition where the small blood vessels get occluded due to damage to their inner lining. This is a very rare but devastating complication of transplantation with mortality ranging from 60-90%.Medications were changed, treatments instituted but to no avail. Sroy’s kidney function continued to deteriorate and soon he was on hemodialysis with no option but to undergo a renal transplant. One of his maternal uncles came forward to donate his kidney and the mother steeled herself to consent for his high risk surgery that fortunately, went off well. But Sroy’s troubles were far from over. He continued to have renal dysfunction and had multiple sessions of plasma exchange, intravenous steroids and high end novel therapies were instituted to save the new kidney. He picked up a urine infection, developed spiking high fevers requiring prolonged antibiotics. He was in the intensive care unit on his birthday, had fever when he cut the cake, yet was happy playing with the toy car his doctors had bought him. The injections, the monitors, the nurses had somehow integrated into his life and the pain couldn’t subdue his joyous spirit. That was what triumphed ultimately when his new kidney worked well, his complications controlled, he danced in his room, his pranks were back and so was the long lost smile on his mother’s face. He had won, a mother’s resilience had paid off and he went home after a 4 month long hospital stay, all hale and hearty.The Clinical Perspective Thrombotic microangiopathy has been reported frequently after stem cell and bone marrow transplants but is exceedingly rare after liver transplantation. After one organ transplant, he needed another – a nightmare for any family and treating unit. He needed strategizing on multiple therapies to control the angiopathy and make the kidney transplant feasible and successful whilst also protecting the grafted liver.  The situation was very challenging and we really feared losing Sroy.

An NRI woman travels all alone with her son for his liver transplant in her homeland“Maanvan, thandian chaavan” goes a popular saying in Punjabi that describes a mother as a shade that cools and protects from the sweltering heat. Search for this solace was perhaps what brought this young lady, hardly in her mid-twenties, to her homeland India. Born and brought up in South Africa, she was of Gujarati lineage. Her parents had migrated before she was born but distances only bring hearts closer. As she landed in India, uncles and aunts,  gathered around her to cuddle her infant son, Hamza.Hamza was a happy baby, his large round eyes lit up as he was showered with gifts, his “shagun”. His mother’s eyes, however, were sad as she looked at him- he was perfect but only for his deeply yellow eyes….Hamza had jaundice since a few days after birth as he suffered from biliary atresia that had caused his liver failure. Why a child develops biliary atresia soon after birth, medical science has yet to fathom. All we know is that it’s universally fatal unless a partially corrective surgery is done within 2 months of life. The success rate for this surgery varies and liver transplant has over the last few decades revolutionalised the management of this otherwise dismal disease by providing the only definitive cure. Hamza’s corrective surgery had failed and his mother had come to her motherland seeking life for her son from the land that gave her hers.Her husband had stayed back to look after their other 2 children and her relatives from Gujarat were her pillar of support here. If God had given her this challenge, he had also bestowed her with tremendous support. She was fortunate to have a family that was so closely knit, it was her sister’s husband who came forward to donate a part of his liver as she and her husband had been rejected as potential donors on medical grounds.Moving from one hospital corridor to the other, she held his hand tightly as Hamza went through the tests and assessments.  Her soft voice and calm eyes spoke volumes for her inner strength as she watched her son being wheeled in for the transplant. Her usually difficult to restrain little one was engulfed in tubings, deep asleep under the effect of anesthesia when he returned after the 10 hour surgery. But he would soon return to his naughty self as his anesthesia effect wore off. He was off the ventilator within a few hours, smiling reassuringly at his mother. It was as if he could sense the turmoil in her heart that she concealed from the outer world. Like mother, like son. Hamza was a brave little lad and would cry briefly when pricked for blood samples and then return to his calm demeanor. Only hunger would unsettle him and he was cheerful once feeds were started 3 days after the surgery. He became the darling of the nurses who wouldn’t tire of playing with him.The Gods favor the humble and Hamza recovered well. He was discharged in 3 weeks time, his eyes perfectly pearly white, carrying only the surgical scar on his tummy as a momento of the terrible illness he was born with and conquered in his native land.The Clinical Perspective Hamza thankfully did not develop any major complications. He had intermittently high potassium levels for which he required a potassium binder. Hamza easily drank the medication mixed with his feeds and was an exceptionally co-operative and easy to manage baby.

A brain haemorrhage post liver transplant surgery instills fears of permanent damage in a child so overwhelmed by the surgery that she does not speak for days together in hospitalTrue to her name, Apoorva, is her story. Apoorva, that has never been seen before, that is unprecedented, never heard of.Lord Krishna is fondly called “Yashoda’s Nand Lal” because the mother who brought him up is revered as a greater life force than his biological mother. Apoorva also had 2 sets of parents – the ones who gave birth to her and the one’s who adopted her. She was adopted within her parents family by their elder brother and his wife who could not beget a child of their own. She was everyone’s darling, doted on by one and all.Just as the joy of her existence was manifold, so was the pain of her suffering. The entire family was in gloom when she was diagnosed with Budd Chiari Syndrome, a condition caused by occlusion of the veins of the liver, in the first year of her life. She had developed fluid collection in her abdomen and an ultrasound showed blockages in the hepatic veins. This would lead to chronic liver disease and she was put on regular medications. True to its nature, the disease progressed and by 4 years of age she had developed cirrhosis and its many complications. There was increased pressure in the veins supplying the liver leading to fluid accumulation in her belly and increased risk of bleeding. She had developed hepatopulmonary syndrome (lung dysfunction secondary to liver disease leading to shortness of breath and breathing difficulty more so in the sitting position). She had become blue and oxygen dependent. Liver transplantation was the only cure.It is said that the strength of parenthood can even defeat nature. Why wouldn’t her disease be defeated when she had 2 sets of parents ready to donate their livers for her? But here lay nature’s irony. While most transplanted children receive livers from either of their parents, Apoorva was like a thirsty person in a sea of salty water. Her biological mother was in an advanced stage of pregnancy and the other three were all rejected as donors due to medical reasons. There was no donor for Apoorva.A cousin of her parents came forward. He was a young lad who had lost his father as a child. His mother showed exemplary courage and magnanimity by keeping familial bonds and humanity above the instinct for self preservation.Apoorva’s transplant went off well. For a few days, all seemed blissful till disaster stuck. She had a genetic condition that gave her blood an enhanced tendency to clot and necessitated medication to keep it thin. Its’ a double edged sword, too thin blood could cause internal bleeding. She had just received one dose but in the backdrop of intermittent blood pressure fluctuations post surgery, she developed a massive brain haemorrhage.Apoorva was immediately operated upon and the clot in her brain removed. Gradually, she improved and the half body paralysis that had occurred showed rapid recovery. The immensely worried team began to relax as she showed progress. She became extra special and everyone wanted to chat her up. But lo and behold, not a word was forthcoming! She would make eye contact, acknowledge with minimal gestures but was completely silent and withdrawn. Days passed, her physical recovery was almost complete. She was ready to go home but her voice was not to be heard. Her team feared she had developed aphasia which is loss of speech due to her brain injury but the neurologist disagreed. “The hospital environment has shut her up”, he said.  After repeat CT scans of her brain were reassuring, she was discharged.To our utmost joy, she came to the outpatients for follow up visits walking well, talking even better. She was the normal chatterbox her parents had known, making one demand after another, now music to their ears. She was indeed one of a kind, Apoorva!The Clinical Perspective Brain haemorrhage is a devastating complication to have after any surgery. The liver surgery had been successful, but to send home a child cured of liver disease but paralysed is a predicament no team can allow. There was no plausible explanation as to what precipitated it. A single dose of antiplatelet drugs should not cause it, nor should mild intermittent hypertension. Her phase of aphasia made us feel helpless, are we so intimidating to the patient? Her full recovery brought immense relief.  

Living under phototherapy since birth, liver transplant enables peaceful sleep in the dark in a cozy bed – finally nights dawn in the life of a girl with Criggler Najjar syndromeWhere there is despair, hope….where there is darkness, light…..goes the famous prayer by St. Francis of Assissi. But what if light becomes one’s despair and a peaceful night’s sleep in the dark someone’s biggest hope? How many of us know that snuggling up in the sheets for a peaceful night’s sleep, something we all take for granted, is denied forever to patients with a disease called Criggler Najjar Syndrome?This was Amal Abubakkar Sayeed’s predicament.….she was to remain under direct light for hours together, ever since she was born, for she was born with this rare disease that affects about 1 in a million. A disease in which an enzyme deficiency in the liver causes impaired excretion of a pigment called bilirubin that accumulates in the body causing severe jaundice starting within a few hours of birth. Untreated, the high bilirubin enters the brain causing fits, permanent brain damage and hearing loss. To prevent this, the jaundice needs to be controlled by keeping the baby naked, with only the eyes and genitalia covered, under lights of a specific wavelength through specially designed phototherapy machines. Phototherapy metabolizes the bilirubin allowing it to be excreted in the urine. Beyond a limit, to protect the brain, the jaundiced blood is removed from the body and simultaneously replaced with normal blood in a process called exchange transfusion.This is the life that was given to Amal. On the day she was born, she developed severe jaundice and the phototherapy unit became her destiny. The comfort of her mother’s lap was not meant for her, for she had to be under the lights, taken out only for feeding. For 2 months she was in hospital, undergoing repeated exchange transfusions and intensive phototherapy.And then she came home, along came her phototheray unit. For 16 -18 hours in a day she would remain under the lights. Born in Yemen, the first child of young consanguineous parents,  who never got a day to enjoy their parenthood. This light was their curse, they learnt to live with their curse.At around 1 ½ years of age, Amal was brought to India. The only cure was a liver transplant that could provide a healthy liver capable of producing the deficient enzyme. The parents were prepared but none of them was a suitable donor. For lack of a donor, they opted for stem cell treatment – an experimental therapy for the disease, at another city in India. Her jaundice decreased partially for a few months decreasing the need for phototherapy, but she was back to square one within 6-8 months.She was 2 years and 3 months of age when they returned to India to Apollo Hospital, Delhi. By now, she had developed some slurring of speech, difficulty in walking and weakness in both the legs indicating early brain damage. Our pediatric neurologist, an authority in her field, opined that her MRI changes could possibly reverse after a liver transplant. Any further delay and she would be a cripple forever. Her hearing was intact.A liver transplant for this disease had never been performed in India. Amal’s maternal aunt volunteered to donate. Amal became the first successful liver transplant recipient for Criggler Najjar Syndrome in India. Within 2 weeks, her jaundice had normalized and for the first time in the 27 months that she had lived, her eyes were white instead of yellow.More than 12 years down the line, she is like any normal girl going to regular school, growing normally, her speech and gait perfect. Only her mother’s moist eyes when she puts her to bed, kisses her goodnight and switches off the lights, speak of her extraordinary tale. She has finally been blessed with darkness.The Clinical Perspective This was the first case of liver transplant for Criggler Najjar syndrome in our country. We were skeptical of the neurological prognosis fearing the deficits, though they were mild, would not improve. Her totally normal development and neurological recovery were well predicted by our pediatric neurologist.

Dr. Sanjay, India’s first successful pediatric liver transplant recipient in 1998 paves the way ushering in a new era in Tranplant SurgeryDead ends force us to seek new routes and history has shown us that adversity brings out the best in humanity. The potential of the human mind is beyond measure. To be a catalyst in the chemistry of breakthrough is a great honour. Just as the world celebrates Louis Brown as its first test tube baby, India celebrates Sanjay Kandasamy as its first successful pediatric liver transplant recipient.Sanjay was born with biliary atresia, a disease of infancy that affects about one in 15,000 babies. When a baby has biliary atresia the flow of bile from the liver to the intestines is absent or blocked. The biliary system is a network of ducts and channels that drains bile from the liver cells to the gall bladder. Bile is then released to the intestines. Bile helps to digest fat and carry waste products for excretion. In biliary atresia, it gets trapped inside the liver causing damage and scarring that leads to cirrhosis. As the liver becomes scarred, it presses against the walls of the veins and blood cannot pass through them properly. The result is portal hypertension (high blood pressure in the portal vein). Biliary atresia in 1997 was a death sentence in our country and most parts of the world.Survival beyond 1-2 years was unfathomable.  The only hope was a Kasai surgery that helps re-establish bile flow from the liver to the intestine by joining the two directly. It has a dismal success rate if delayed beyond 2 -3 months of life.  By the time a diagnosis was arrived at, most children would be too old for a favorable outcome. Even with a successful surgery, the child would ultimately develop liver failure over the years in almost 70-80% of the cases.Sanjay developed jaundice a few days after birth. As the jaundice increased, he underwent investigations and a diagnosis of biliary atresia was made. He was referred for a Kasai operation and had the surgery at 62 days of life but his liver had already been damaged. He continued to have jaundice and also developed recurrent episodes of fever and abdominal distension. By 18 months of age, he had severe growth failure, was severely jaundiced, all swollen up because his diseased liver failed to produce appropriate protein leading to fluid accumulation in his body.His only hope for survival was a new liver. His parents knew he didn’t have more than a few months at the most. Their doctors had mentioned the possibility of undergoing a liver transplant abroad. That option was way beyond their financial capacity. A liver transplant programme had been started at Apollo Hospital, Delhi around that time but the only child transplanted (who had received a cadaver liver which did not function) had not survived.They were in a dilemma. Though the financial hurdle was overcome as the hospital was willing to do away with the charges, they were still unsure. They did not want their child to die suffering in hospital, far away from his native place and family. Should they allow him to live peacefully as long as he could? The thought that they could end up losing the few weeks that he had was heart wrenching. Would they be able to live with that guilt? A parent would have to undergo a major surgery to donate a liver segment. To subject oneself to a surgery that had never been done in India was walking a dark, unknown path. What if they ended up losing both their son and their partner?Liver transplant was a difficult and unsure path, nevertheless, it was the one that showed a bleak ray of promise. Hoping against hope, they clung to that miniscule ray. With tremendous courage they swallowed all their fears and chose to risk all they had to give Sanjay a chance. After all, great love and great achievements involve great risk.It was a decision they celebrate to this day when their son hugs them. His mother still finds it difficult to hold back her tears when she recollects his days in hospital. Sanjay had a very complicated postoperative course and was in hospital for 4 months after his transplant. He required prolonged ventilation, developed repeated perforation of his intestines undergoing surgery five times. He required high dose medications to treat liver rejection as his body’s immune system fought the new liver. Repeated surgeries and prolonged ventilation led to infection that was another challenge to overcome. But overcome he did, each and every hurdle that was thrown his way.Today, 22 years down the line, he aspires to be a surgeon himself having already completed his medical graduation to become a doctor. He continues to inspire families facing the transplant option and doctors when tough clinical scenarios daunt them. He is truly the path breaker.  The Clinical Perspective Sanjay was the first child to undergo living related liver transplant in India. He developed one complication after another. The transplant surgery itself had been successful with the graft and blood vessels well taken. To lose a patient to surgical issues in other organs would have been very painful. Sanjay underwent multiple other abdominal surgeries, each a potential threat to his life and our transplant programme.

Twin blessingsTwo sisters save their brother by donating a part of the liver and a kidney in a child from Ethiopia, requiring a combined liver-kidney transplantMukhtar Ahmed Ali Gadkarim, a 13 year old boy from Sudan was brought to Indraprastha Apollo Hospital, Delhi with end stage renal failure. He had been passing stones in his urine since the age of 7 and had damaged both his kidneys requiring hemodialysis thrice a week for a year. He was in complete renal shutdown with no urine output for 12 hours and generalised swelling of the body due to fluid retention.  He was hypertensive, his kidney tests were deranged with a serum creatinine of 5 mg/dl (normal 0.3-1.2 mg/dl) and ultrasound of the abdomen revealed bilaterally calcified kidneys.He was detected to have very high oxalate levels in his blood and bone marrow leading to the diagnosis of a very rare genetic disorder, primary hyperoxaluria. This has a prevalence of only 1 to 3 per million and results due to a biochemical defect in the liver. A deficient liver enzyme leads to excessive production of oxalate that complexes with calcium to form calcium oxalate crystals which accumulate in the kidneys, bone, heart and other organs.  Earlier, a definitive diagnosis required documenting the deficient enzyme in liver tissue by obtaining a liver biopsy. But with the availability of genetic studies, we can isolate the aberrant gene by gene sequencing, thus avoiding a liver biopsy. He tested positive for the AGXT gene that causes primary hyperoxaluria, thus confirming the diagnosis.Dialysis is inadequate treatment for these patients as it cannot overcome the ongoing oxalate production. A kidney transplant alone doesn’t suffice as the oxalates will reaccumulate and damage the new kidney as well. Cure occurs only if the deficient host liver is replaced with a liver that has the deficient enzyme, thus necessitating a combined kidney and liver transplant.Mukhtar was given multiple sessions of haemodialysis over a month and a half to deplete oxalate from the body before transplant. Fortunately, he did not have cardiac damage and was in a position to withstand the formidable surgery. His story is a glorious tale of human courage, bonds and sacrifice. His twin sisters aged 27 years were the donors, one for the kidney and another for the liver. One of the sisters is a doctor and played a crucial role in mentally preparing the family for the transplant.A team comprising of liver and renal transplant surgeons with expert anaesthetists performed the surgery that lasted nearly 12 hours, with the liver being transplanted first followed by the kidney. Mukhtar’s recovery was dramatic and he was off the ventilator within 24 hours. His renal parameters improved, his urine now did not show any oxalate crystals and he was discharged in 3 weeks’ time. Both his sisters also recovered well and the jubilant family returned to their native country with a new lease of life, overwhelmed with gratitude towards our country, our doctors, modern medicine and divine grace.     The Clinical Perspective Arriving at a diagnosis was the first challenge. Increased oxalate excretion in the urine is the usual first line test but Mukhtar wasn’t producing any urine at all. Oxalate crystals were detected in the eyes and genetic tests sent were confirmatory. That he had twin sisters was a blessing. He needed two donors, one each for the liver and the kidney. It was a huge help both for the family and the transplant team that one of them was a doctor herself.  On a follow up of 4 years, he has remained well with no significant post transplant complications.

~ Health of the Nation 2021 Report gives unique perspective on trends of non-communicable diseases across the country, shows path for early identification and management using AI, ML and data analytics ~National, April 7, 2021: On the occasion of World Health Day, the Apollo Hospitals Group, Asia’s largest and most trusted healthcare group, unveiled a report on the Health of the Nation that puts a spotlight on how the last two decades have seen a steady rise in non-communicable diseases (NCDs).  The contribution of NCDs as the top causes of death in India has risen to a staggering 64.9% as compared to communicable diseases, maternal and other causes that dropped to 25%. The study provides a unique perspective drawn from Apollo Hospitals’ 37 years of experience and its vast footprint across the country and underlines how Artificial Intelligence and Big data analytics can help to predict risk and prevent NCDs. Given the pandemic, this is also important as individuals with NCDs such as diabetes, heart disease, hypertension, chronic kidney disease, and chronic liver disease have a greater mortality risk from COVID-19.Dr Prathap C Reddy, Chairman, Apollo Hospitals Group said,“Even before the pandemic began, we have been facing an unacceptable loss of lives due to non-communicable diseases (NCDs). The silent epidemic of NCDs was evident with NCDs behind 40% of all hospital stays. However, in dealing with the COVID-19 pandemic, the data from our Health of the Nation report made it clear that we have let another epidemic slip, the epidemic of NCDs – the impact of which we are already beginning to see around us. We can overcome NCDs together as a country, only if each and every one of us take our health seriously.“At Apollo, we have been working on preventive health for over 37 years. From the very first Master Health Check in the country, we have been constantly evolving our programs for early detection and better clinical outcomes. Apollo ProHealth is a proactive personalized health management program backed by cutting-edge technology – advanced diagnostics, artificial intelligence and predictive algorithms – to help identify your health risk. It coaches you to stay on the path to wellness until your health goals are achieved. With Apollo ProHealth, we hope to change the health check paradigm from a long checklist of tests to a meaningful conversation with the doctor on the status of your health, with a comprehensive plan to make you healthier tomorrow than you are today. Today, on World Health Day, on behalf of the Apollo Hospitals Group, I dedicate Apollo ProHealth to the health of our nation!”NCDs affect not just health, but also productivity and economic growth. The 2030 Agenda for Sustainable Development adopted by the United Nations recognises NCDs as a major challenge for sustainable development with the target to reduce premature mortality from NCDs by one-third by 2030. The pandemic last year has exacerbated the risks and impact of NCDs manifold, as also shown in the Health of the Nation report.Dr Sangita Reddy, Joint Managing Director, Apollo Hospitals Group said,“Apollo Hospitals’ commitment is to the health of the nation, with a vision to make our nation healthier. With the urgent need to respond to the challenge of non-communicable diseases, we cannot afford a pure treatment and curative approach to health. We believe that a focus on prevention will be transformative for the health of the nation. We are harnessing the power of technology to develop new methodologies for screening, detection, and patient risk profiling. We are using our pioneering experience of over 37 years and countrywide network to create and innovate new models of care to improve clinical outcomes. We have been the first to adopt Artificial Intelligence and Big data analytics to predict risk and personalize care.“Today, we are showcasing our insights into a vast amount of health data that will form the foundation of a healthcare model for our future. Many arms of Apollo Hospitals have worked together, collating their knowledge, data on the incidence of disease, and put that into one holistic report that is a representative study of the Health of the Nation.”NCDs account for 65% of all deaths in India. There is a need to look at new norms of preventive health management that allow us to detect and tackle risks from NCDs before they manifest, even more so in the context of the COVID-19 pandemic. The Health of the Nation report offers a unique perspective of the healthy and unhealthy – across occupations, economic segments, and demographics, and trends of non-communicable diseases across the country.The study will help put in place approaches to improve disease prevention, increase the accuracy of early diagnoses that will, in turn, lead to a more personalized and patient-centric treatment approach.Dr Anupam Sibal, Group Medical Director, Apollo Hospitals Group said,“The Health of the Nation study highlights the need to direct our efforts efficiently towards controlling NCDs through optimal use of our healthcare infrastructure.The highest prevalence of pre-diabetes and diabetes is seen in 45-60 year olds and is almost as high as the 60+ age group. Amongst the diabetics, around 50% also have hypertension and are above the recommended weight. Around 60% of these diabetics are also leading a sedentary lifestyle. The data also indicates that while women have lower incidence of NCDs, the difference is marginal. Hence, they must stay vigilant. The economically disadvantaged are also not spared, although with lower prevalence.”There is a significant diabetes population in the major metros and suburbs of India, especially the Delhi NCR – Punjab & Haryana Belt, Kolkata, entire Mumbai-Ahmedabad belt, Hyderabad and Chennai, Kerala and Tamil Nadu, as well as in the predominantly rural areas of MP, Maharashtra, UP, Bihar, parts of Orissa and Gujarat. There is a significant hypertensive population in major metros such as Delhi, Punjab & Haryana, Kolkata, Mumbai, Goa, Trivandrum and Hyderabad and in the predominantly rural areas in Tamil Nadu, Karnataka, UP, Bihar, Orissa and Gujarat.Prof. Nirmal Kumar Ganguly. Former Director-General, Indian Council of Medical Research and President, Apollo Hospitals Educational and Research Foundation said,“Our pilot community health model, Total Health, to reduce premature NCD-related deaths in rural areas was launched in 2013 in Aragonda, Chittoor district. The program saw 31,350 people classified as low risk, moderate risk and high risk, according to their ten-year risk of developing NCDs, and proactively managed with regular follow up, investigations, medication, clinical interventions, counselling and lifestyle modifications for diabetes, hypertension and cancer. In addition, the program also addresses all other social determinants of health in the country (e.g., drinking water, nutrition, kitchen gardening, livelihood generation) to beyond just health to ‘Total Care’ for ‘Total Health’.Around 80% of mortality from NCDs is preventable with early detection and proper management. It is critical to continue to focus on regular health check-ups to detect NCDs along with AI-enabled tools that allow premature health events to be identified early.Under this program 1,980 diabetic and hypertensive patients have been put under regular follow up, who are under now control with proper investigations, medication, counseling and life style modifications. Also 5,391 rural women were screened for cancer and 17 early cancer cases (cervix and breast) were diagnosed and managed with appropriate health intervention services which were free of costDr Sujoy Kar, Chief Medical Information Officer said, “The study gives us the data that will allow the effective use of technology to predict risks and guide our actions to prevent and rein in the NCD epidemic. One such example is to evaluate and manage the High Sensitive Troponin-I (hsTnI)categorical CVD risk in subjects undergoing preventive health checks (PHC).  “AI and predictive algorithms can predict risk, prevent premature health events, and overcome chronic lifestyle diseases, when caught early. For example, we have developed a Cardiovascular Risk Score (AICVD) in the Indian population and it is now prospectively used and followed up on 33000 individuals as part of ProHealth to predict the risk of developing cardiovascular disease.There are various clinical tools using AI and data analytics ready for deployment as well as under research for various NCDs. These include tools and algorithms to identify medical issues early in CT scans, predict various risks including the risk of developing cardiovascular disease, asthma, liver fibrosis in NAFLD, breast cancer, pre-diabetes and stroke.Dr Sathya Sriram, CEO, Preventive Health, Apollo Hospitals Chennai said,“The Health of the Nation study has shown us the importance of shifting the paradigm in India from a curative to a preventive mindset. Apollo ProHealth, empowered by AI and predictive algorithms, is a personalized proactive health management program based on 22 million health checks, building on Apollo’s pioneering efforts in preventive care and led by medical experts committed to making individuals healthier. Apollo ProHealth includes personalized health risk assessment to predict health risks and diagnostics tailored to your profile, physician-led evaluation for a personalized treatment plan and wellness goals, and Health Mentors to regularly monitor your health parameters and help individuals stay on the path to wellness. Over the last 12 months, a cohort of ProHealth guests with diabetes have shown 33%-60% target achievement across multiple health parameters, such as blood pressure, cholesterol, physical activity and HbA1c. The Health of the Nation report is the basis on which NCDs can be managed proactively, with the data used for early identification and management of NCDs using AI and data analytics to enable India to follow an accelerated path to meet SDG goals by 2030.