Puspanjali Kanhar, 33, vividly remembers the first time she took her newborn twins to her village Milipada, located in the lush green tribal belt of Kandhamal district in Odisha. She was nervous and frightened. Hers were no ‘ordinary’ twins, they were joined at the head. The entire village gathered around her in curiosity.
Puspanjali also recalls her own horror and confusion when she saw her children for the first time. “The doctors and nurses called out to each other when they realised in the middle of the delivery that everything wasn’t going as expected,” she says. “The delivery itself was tough. I was in a lot of pain. When they showed me the children, I screamed.” She pauses. “I couldn’t cradle them. I couldn’t breastfeed them. They had to be given feeding bottles. After a few months in the hospital, we went home with the twins.”
That unexpected day was April 9, 2015. Puspanjali had no idea then that her twins would go into history books two years later. On August 28, 2017, a battery of doctors working round the clock at the All India Institute of Medical Sciences (AIIMS) in New Delhi began the extraordinarily complicated process of separating the twins, Jagannath (Jagga) and Balaram (Balia). There was nervousness and expectation in the air; the stakes were high. But three months and two major surgeries later, the doctors were successful. Following their separation, Jagga and Balia were kept under observation in Delhi for two years. Now they are back in Odisha, in the busy Srirama Chandra Bhanja Medical College and Hospital in Cuttack, over 260 km from Milipada, where they are undergoing care and rehabilitation.
Jagga and Balia are still subjects of curiosity everywhere, but in a different way now: they are famous as the country’s only surviving twins who were craniopagus conjoined and then separated. They are being hailed by some as little medical marvels.
‘I was terrified’
While their mother speaks to me near the window of the hospital room of Srirama Chandra Bhanja, the stronger of the twins, Jagga, is busy singing the English alphabet and staring at a book that he is holding upside down. “Jagga is calm, curious and easygoing, while Balia is moody. Jagga loves to interact with people; Balia is more reserved,” says Puspanjali.
For Puspanjali, Milipada has been her home for as long as she can remember. She had never stepped out of the confines of her village until the time she was taken to the city hospital in Phiringiya in Kandhamal district 10 days before the babies were due. Milipada is a village without a motorable road, where most women deliver at home. When the time comes, midwives are summoned, the baby is delivered, and the umbilical cord cut.
“My two other boys were delivered at home, and this was to be no different,” Puspanjali recalls. “But I felt a strange uneasiness towards the final term of my pregnancy. I was in severe pain in the last 15 days before the delivery. That’s when my husband Bhuyan and I took a ride down to the city hospital.” Bhuyan does odd jobs and the family does not have a steady source of income.
“I don’t remember a lot about the trip, except that I was in constant pain,” she continues. “I walked some distance and when I got tired, we hired an auto to reach the hospital. Doctors assured us that everything was fine, but I felt uneasy. A midwife at the Phiringya hospital who had massaged me told me that I was carrying twins. But nothing prepared me for what was to follow. We decided to stay back near the hospital instead of heading back to the village that day. Coming to the hospital again would have been too expensive and physically demanding.”
“Immediately after the delivery at the city hospital, a nurse told me that we had been blessed with twins,” Bhuyan joins in. “She then said they were fused together, and that the doctors were wondering what to do. I could not comprehend what she was saying and kept asking her about my children. She took me to see the children. I was terrified. I could not even begin to imagine the medical strain and turmoil that awaited us. I started crying,” he says.
Puspanjali and Bhuyan took their twins back to their village in Kandhamal, to a devastated family. Bhuyan’s mother, however, got over the shock and took to the children almost instantly. She fed them, initially in a bottle and then with a spoon, and bathed them, even as Puspanjali was recovering from the normal delivery that wasn’t easy.
One in 25 lakh
The twins were often taken to the city hospital for treatment. The doctors there realised that Jagga and Balia were high-risk babies. Even attempting an invasive intervention could prove fatal for both. Admitting that the case needed a skilled, collaborative effort for any favourable outcome, they referred the children to AIIMS. The twins were first brought to the Delhi hospital in July 2017, aged two, with a combined weight of 20 kg. They underwent a series of tests.
Twins joined at the head are rare. AIIMS records only 116 such births since 1912, of which both the twins in the set survived only in 15 cases. “Craniopagus is the rarest form of conjoined twins with an overall occurrence rate of 0.6 per million births,” says A.K. Mahapatra, the co-lead of the final surgery. S.S. Kale, the head of department of neurology at AIIMS, says that these twins are always genetically identical and thus same sex, which is often female. (The female to male ratio among these babies is 4:1.) “Race, maternal age, heredity or environmental reasons are not known to cause this. Relatively few craniopagus twins survive the perinatal period — approximately 40% of the twins are stillborn and an additional 33% die within the immediate perinatal period, usually from congential organ anomalies,” he says.
“We knew that the stakes were very high,” says Deepak Gupta, professor of neurosurgery and head of the team that separated the twins on October 25 after a 25 hour-long surgery that brought together 125 doctors and support staff from AIIMS. Together with the first surgery of 20 hours, the combined surgery time to separate the twins was 45 hours. The Odisha government sanctioned ₹1 crore for the surgery. It continues to bear the costs of treatment and rehabilitation. AIIMS has now returned ₹80 lakh to the Odisha government. It charges the twins only for medicines and equipment that are not available with the State government.
It was with many medical personnel, advanced technology, intensive research and practice sessions, and countless hours of care that the medical team at AIIMS performed what is being called a breakthrough in the medical fraternity the world over. “The world was watching us. Our success has put India on the world map. Of course, the fact that we would save the lives of two children was our driving force. There were times when we hit lows, yet our team persisted,” Gupta says.
Paediatricians Rakesh Lodha and Sheffali Gulat add: “The goal was to ensure the best outcome for these little boys. When Jagga responds to us positively, and when we see him growing, the struggle seems like an opportunity to learn more.”
Separation and complications
The doctors explain the case. Jagga and Balia shared brain tissue and venous sinus and needed two invasive procedures before their final separation. “Technological developments helped,” says Gupta. 3-D prints and models were made after preliminary investigations for drawing the road map to operate. The world over, neurosurgeons use a high-definition 3-D imaging device to see inside the brain during surgery, allowing them to map safer pathways to reach and remove tumours.
In the first phase of the surgery, doctors created a venous bypass to separate the veins returning blood to the heart from the brain of the twins. In the final separation, skin grafting and minor neurosurgical procedures were done by the plastic surgery team to cover skin defects.
But despite their “best-laid plans and despite having the best brains and hands on the operation table during the final separation”, Jagga suffered a cardiac arrest during the surgery, Gupta says. That adversely affected his renal system. “He required dialysis for some time. And Balia suffered seizures which caused intellectual impairment,” he says.
“During the final separation, our cardiac and neuro-anaesthetists played a very important role in pulling Jagga through,” he continues. “In the last few hours of the marathon 20-hour surgery, Jagga’s heart stopped after being physically separated from his twin. When that happened, our cardiac anaesthesiologist Sandeep Chauhan resuscitated the child for almost 35 minutes non-stop and brought him back to life again.”
The couple’s older children Dhaitya, 10, and Ajit, 8, in their village Milipada in Kandhamal district of Odisha.
In the final surgery, the twins’ head skin flaps were covered.
The long road ahead
A year after the surgery, AIIMS considered discharging the boys. “But parents and State authorities weren’t sure if they would be able to provide the best for the children. So we decided to host them for some more time,” says Maneesh Singhal, a plastic surgeon at the hospital. After coordination with the Odisha government, the twins were taken to Cuttack in September by train, after a lot of preparation and teary farewells in Delhi.
Though separated, the twins have a long medical, developmental, and social battle to win, for a semblance of normal life to begin. For one, they will need hospital assistance for care and rehabilitation, and going back to their village any time in the near future seems impossible, say the hospital staff at AIIMS. They will also need skin grafts and extensive physiotherapy to allow them a good quality of life.
Besides this, other challenges too await the boys. Jagga, 4, has to go to school and needs to wear a special helmet to protect the part of his skull that has to grow back. This will protect him from falls and injuries. He has to avoid contact sports, says Singhal.
“He will need strong psychosocial support and rehabilitation during his growing phase. He will also undergo cranioplasty [surgical repair of a bone defect in the skull],” says Gupta.
Besides the medical challenges, the boys are still to get to know their family, especially their two older brothers, Dhaitya, 10, and Ajit, 8. “They have to relearn the normal life of a child — play with children of their age, have social interactions with family, friends and neighbours and even pets. They have to basically outgrow their hospital way of life,” Gupta explains.
While Jagga is “thriving”, Balia is currently battling chest infection after the duo was discharged from AIIMS over a month ago. He is on ventilator support. Balia will need a lot of time to recover from his neurological status and needs special supportive care for a few years at least, say doctors.
‘Maybe God has a plan’
Jagga lives with his parents on the second floor of the same hospital unit where Balia is undergoing treatment. Given all these challenges ahead, “I don’t know where life is going,’’ says Puspanjali as she helps Jagga drink his milk. She speaks of both of them lovingly, sharing little details of their development. Like any child, Jagga is fussy about the food he eats. “He loves fish fry, chicken and flavoured milk.” Nobody is allowed to mess with Jagga’s prized possession, a multicoloured plastic ball with which he plays every day. Walking around in his helmet, Jagga is like any other four-year-old — he cannot wait to play with his older brother who recently visited him at the hospital.
The twins recovering after their surgery in AIIMS, Delhi.
For Puspanjali, life has been full of twists and turns and surprises. She describes her journey to Delhi: “It was like a foreign country!” But the kindness of the staff there made things easy, she says. “We were told before every operation that either or both the children may not survive, but I was sure that I wanted them to be separated. They could not have lived like that. Maybe God has a plan. I hope he has a good plan because we have no plan, no idea, no resources of our own,’’ she says.
Despite all the odds and hardship and the constant fear that her twins may not survive, Puspanjali says that the struggle has been worth it. “I can’t remember how we descended from the hills of my village and came to Delhi with nothing but hope. The doctors at AIIMS told us that this is the children’s destiny. Nurses also say that God will show us the way forward,” she says.
Puspanjali and Bhuyan also miss their home. “We have been out for over 700 days now. We don’t know if we will finally take back our children alive from here,” says Bhuyan.
“I miss my bed, the food there, my pond, and I miss having a life without so much chaos and uncertainty,” says Puspanjali, in the broken Hindi that she has picked up in Delhi.
Back in Milipada, villagers feel that the twins’ arrival has also drawn the attention of the State government to the condition of the village. The villagers are protective of the twins. “Poverty has driven my children and grandchildren away from us when we need them the most. But we wish them a good life and all the comfort that we can’t even imagine. If not anything else, they will at least have good food once a day and access to a hospital when they are sick. That itself is a miracle,” says the boys’ grandfather, Turuda.
Spotlight on Kandhamal
The case has also put the spotlight on Kandhamal. The district has about 810 inaccessible villages that can only be reached by foot. This is why most women deliver at home. But things are also changing for women like Puspanjali. The district is showing admirable growth in institutional delivery, following interventions by the State government. Use of bike ambulances, delivery vans and ‘Janani’ autorickshaws have helped Kandhamal shed its ‘backward’ tag and emerge at the top of the 30 districts in Odisha, says a State health official. The government estimated a 103% rise in institutional deliveries in Kandhamal from April to July this year. This was the highest rate of institutional deliveries in the State, and higher than the State average of 76% during this period, the official says. Puspanjali and Bhuyan hope to go back some day to this improved district, where everyone waits for them eagerly. “We are totally dependent on charity for our children’s survival. While Jagga is making progress, Balia isn’t doing well. I know that Balia may not make it, but I feel that at least one of my children should have a better life than me,” Puspanjali says.
