Two years after they became India’s first set of twins joined at the head to be separated successfully, Jagga and Balia left AIIMS 10 days ago, with a full medical team and medicines for 6 months
The lift on the sixth floor of the Cardio-Neuroscience Centre (CNC) at AIIMS slides open and a four-year-old comes out giggling, holding nurse Sister Ancy’s hand. But before the door can shut again, the boy rushes back in. “Sittu, second floor again,” he squeals; “sittu” his version of ‘sister’.
It’s two days to Jagga’s departure from AIIMS, his home for the past two years. Every second of that time, the resident doctors and nursing staff of the specialised CNC in India’s premier hospital have kept a close watch, watching a marvel of medical science turn into a bouncy four-year-old, running around and playing football in the corridors.
When Jagga first came to AIIMS on February 10, 2017, at the age of two, he shared the full length of brain tissue and venous sinus with his twin. Following a 45-hour surgery, done in two parts, spread over three months in 2017, the two became the first set of craniopagus twins in India to be separated successfully. AIIMS doctors say only 59 such surgeries have been attempted across the globe, with a success rate of around 10 per cent.
Born on April 9, 2015, to a tribal couple — autorickshaw driver Bhuyan Kumar, and wife Puspanjali Kanhar — Jagga was initially named ‘Honey’ and his twin ‘Singh’. The parents say acquaintances started calling the two that, and they themselves had never heard of the singer. Doctors at AIIMS suggested the names Jagannath and Balram, both names of gods, calling the two “god’s descendants”. Over the next two years, from Delhi to Odisha, they came to be known as simply ‘Jagga’ and ‘Balia’.
To aid in planning the surgery of Jagga and Balia, doctors created a 3D print polylactic acid model to run two eight-hour-long dry rehearsals. This was the first time in the country that a highly advanced 3D print skull and brain model with brain circulation anatomy inserted was used for craniopagus separation surgery. The model was developed based on information derived from MRI, CT-Scan and angiogram of the twins, and simulated their head structures. During the first surgery, that lasted 25 hours, doctors partially separated the two brains with venous bypass — they used a healthy vein to make a new path around the part of the vein that was not working. The two separated hemispheres were then kept apart with insertion of a biofilm ( tissue gel film). The dura mater, a connective tissue surrounding the brain, was covered using dural substitutes. Despite its length, the surgery turned out to be uneventful, with a mere 550ml of blood lost. At the end, two skin expanders were inserted after replacing bone flaps. In the second, 20-hour, surgery, the two brains were completely separated. The doctors first explored the same side and then the opposite side of the brain to complete the separation. Two brains were delicately separated with microscope assistance, and venous connections between the two brains were divided. Final separation of the two children happened at 20.40 hrs on October 25, 2017, and they were now Jagga and Balia, ready to live their separate lives. Barely 10 minutes after separation, however, Jagga, who was in OT1, developed venous air embolism and had a cardiac arrest. He was resuscitated by cardiac anaesthetist Prof Sandeep Chauhan but it took 15 minutes to get his heart beating again. In another operation theatre, Balia required flap surgery to cover the skin defect over the separated brain and remained stable during this period.
While doctors say Jagga is physically and neurologically fit, Balia remains bedridden, sleeps for almost 18-20 hours of the day and is fed orally through a tube.
On September 6, the two, accompanied by their parents, a medical team, 15 bags, including with medicines for the next six months for Balia, medical equipment, and toys gifted by the hospital staff, left Room No. 6010 of CNC for Cuttack’s SCB Medical College and Hospital. The 23-hour train journey had been much dreaded by Bhuyan and wife Puspanjali, 36 and 33, who survive on his monthly income of Rs 5,000, and fought a parallel battle to keep their twins as long as possible at AIIMS.
The doctors aren’t sure when the four of them can finally go home, to village Milupada in Kandhamal, almost 260 km from Cuttack. Waiting there would be Bhuyan and Puspanjali’s elder sons, Ajit (10) and Dutya (8), who have been living with their grandmother since 2017.
Twins joined at the head are rare — 1 in 25 lakh or a possibility of 0.00004 per cent. As many as three-fourths die within 24 hours. AIIMS doctors have records of just 116 such births across the world since 1912.
A surgery for separation is feasible in case of just 25 per cent of the survivors, while the rest have to live with the condition. Like the two other known craniopagus twins in India — Vani and Veena (17), Hyderabad, and Saba and Farah (23), Patna. In case of both, surgeries were considered by doctors but the idea was given up due to the risk involved.
Jagga and Balia, with their parents, arrived at AIIMS on July 10, 2017, referred there by the government SCB Hospital. For the next five months, doctors conducted a series of tests, including MRI tractography (to study nerve tracts), CT scan, angiogram, image guidance and ultrasound. Finally, they were cleared and admitted for surgery on July 14. At the time, they together weighed 20 kg.
WHAT MAKES the surgery performed on Jagga and Balia special is that twins joined at the head are rare — 1 in 25 lakh or a possibility of 0.00004%. As many as three-fourths of them die within 24 hours. AIIMS doctors have records of just 116 such births across the world since 1912, of whom in only 15 cases, both twins survived.
Says the then Chief of Neurosciences Centre, AIIMS, Dr A K Mahapatra, “This was the first such case in my career of 42 years with AIIMS. We wanted to see how their body parts were functioning, and found only their brains had a problem. We then selected a team of doctors who could work dedicatedly with the children,” he says. Having retired from AIIMS in December 2017, he stayed in touch on the Jagga-Balia case till April 2018.
A WhatsApp group was formed with 33 members, dubbed ‘Team AIIMS Craniopagus’, to ensure inter-departmental coordination on the case. The group had faculty from departments such as neurosurgery, plastic surgery, anaesthesia, paediatric intensive care, paediatric cardiology, paediatric nephrology, paediatric neurology, physiotherapy, radiology and even blood bank.
3D print technology was used to make a model of Jagga and Balia’s brain and skull. The consultations sometimes spilled over till the middle of the night. The family was counselled on the risks associated with the risky procedure.
After a dry run, the first surgery was performed on August 28, 2017, with doctors creating a ‘venous bypass’ to separate the veins returning blood to the heart from the brain of the twins.
The final separation was done on October 25, in a 20-hour operation, by a team that included Dr (Prof) S S Kale, Head of Department, Neurosurgery; Dr Deepak Gupta, Professor of Neurosurgery and head of the team; and Dr (Prof) Sheffali Gulati, Department of Paediatrics-Neurology.
During the surgery, Jagga had a cardiac arrest. While he was revived in 15 minutes, he suffered renal damage and required dialysis for almost a week. Balia, who suffered seizures, needed incubation, and continues to be “neurologically disabled”. Says Dr Gupta, “Balia has profound intellectual impairment… He needs time to improve his neuroplasticity, which is the brain’s ability to adapt as a result of experience. He needs some ophthalmology consultation too… He requires long-term rehabilitation. It’s hard to say whether he can lead a normal life.”
Skin grafting and minor neurosurgical procedures followed over the next few months of the surgery, to cover the twins’ skin defects. The medical institute designed special helmets for the boys to wear to protect their heads. “The helmets are only needed if they are playing or running,” says Dr Gupta.
In all, a team of 75 doctors and 50 nursing and support staff worked on the Jagga-Balia case, including post-operative care. A similar surgery in the US in 2016 had cost $2.5 million (Rs 17 crore). For Jagga and Balia, the entire cost has been borne and continues to be borne by the Odisha government. Of the Rs 1 crore given by the state, AIIMS has already returned Rs 80 lakh and plans to return Rs 2 lakh more, charging only for the medicines and equipment that were not available with it.
One year after Jagga-Balia’s surgery, AIIMS started deliberating their discharge. By 2018, the boys were medically fit to be moved. However, the family, as well as the Odisha government, were apprehensive.
Dr Gupta says that after monitoring the two for a year since, a decision for transfer was finally taken. “The two just need home care now. Jagga can start going to school and Balia doesn’t require any specific treatment.”
Bhuyan admits he worried whether the two would get the same care as at AIIMS. “But doctors advised that Balia too was better and there would be no complications.”
A long coordination exercise with the Odisha government followed, and AIIMS finally got the confirmation that the twins could be moved on August 29 this year. Apart from sanctioning Rs 1 crore from the Chief Minister’s Relief Fund, the Odisha government appointed an officer to be with the family till the time the children were treated completely.
Naba Kishore Das, Odisha Health and Family Welfare Minister, says it was thanks to “the intervention and financial support” of Chief Minister Naveen Patnaik that Jagga and Balia were successfully separated. Saying they will continue to bear the cost of their treatment and rehabilitation, he adds, “An official from Kandhamal district and another official from Odisha Niwas, Delhi, have been deputed to be with the family.” The CM and Das also visited the twins during their two-year stay at AIIMS.
To prepare for the transfer, doctors prepared a check-list of the items to be carried to Cuttack, including medicines, two oxygen cylinders and a nebuliser.
Dr Gupta says that in the run-up to September 6, their WhatsApp group almost never stopped buzzing. “Last one week was extremely hectic. It was our responsibility to ensure that the two were shifted safely… Time was less and the work never-ending. But the smile on their faces was something that took away our entire burden.”
But, the last day turns out to be hard.
All of September 6 morning, as parents and staff make last-minute arrangements, Jagga refuses to leave the nurses’ counter. Clad in a yellow T-shirt and black trousers, he moves away only to insist on playing with “Tarak bhaiya”, “Randeep bhaiya” and “Ajay bhaiya”, the guards and sweeper deployed on CNC’s sixth floor.
Around 35 nurses and several resident doctors have come to bid goodbye to the twins, staying well past their duty hours.
Tears flowing freely down her cheeks, Sister Bindu says, “It is the toughest moment of this two-year journey to see them go. Taking care of Balia and playing with Jagga was part of our daily routine. The liveliness of the ward will die.” Others recall the time that the two were yet to be separated and would together waddle around.
“Jagga loved the South Indian food we got for lunch. If we needed to call anyone, he would run up to the person himself, calling, ‘Tarakk bhaiya’, ‘Sittu, sittu’,” says Ancy.
One of the nurses earlier took Jagga to a church. “Everyone has their own belief. We wanted the priest to bless Jagga for a happy life,” says Ancy, who will be accompanying the family to Cuttack along with another nurse, Dr Gupta, neuroanaesthetist Dr Girija Rath, and paediatrian Dr Kiran Kumar.
Around 2.30 pm, the family heads out, accompanied by the staff. The many bags are loaded onto an ambulance, under Ancy’s eagle eye. As the ambulance doors are closed, the staff cheer simultaneously.
Ancy says they are leaving well ahead of departure time of the Delhi-Bhubaneswar Rajdhani so as to avoid any rush. The ambulance will halt in the VIP parking of the New Delhi Railway Station to coordinate smooth loading of the luggage and medical equipment onto the train. “The oxygen cylinder is for Balia, in case his condition deteriorates,” says Ancy.
Besides, a special saturation monitor, used to track pulse and oxygen rate, has been arranged in the AC First Class coach in which they get on, while there is a power board to ensure that all switches are in working condition.
As the Rajdhani chugs off, Jagga rushes to grab a window seat, and sitting in Ancy’s lap, claps excitedly. Balia, dressed in a red T-shirt and beige trousers, is laid down on a lower berth.
It takes 15 minutes for the medical team to adjust the luggage around them. The toys alone take quite a bit of area, with a bicycle, board games and a bathing tub occupying an entire berth.
Sitting next to Balia, his mother Puspanjali stirs milk fortified with a nutritional supplement in a steel glass. Balia is fed 100 ml of milk every two hours through a tube, starting in the morning at 7, till 10 pm. “Balia, utho, utho, utho (get up),” she says, caressing his cheeks.
Her voice breaking, she talks about her other two sons, whom she would be seeing for the first time in two years. With money scarce, they could never visit them in Delhi. “Pata nahin sab kaise honge. Itne din ho gaye bachchon ki shakal dekhe hue. Hum log to abhi bhi Cuttack mein rahenge, kya pata kitne saal (God knows how they are. It’s been so many days since I saw my children’s faces. Even now we will stay in Cuttack, don’t know for how long),” she says.
Jagga is again running around, through the length of the train’s compartment, a change from the hospital corridors. “Papa, chalo (come),” he pleads, when told to sit down.
Around 5.20 pm, the doctors, who are travelling in F1 coach, come to examine Balia. “Please check again that all the switches are operational,” instructs Dr Gupta. “Ae master, uth, dekh gaadi aa gayi. Uth (Hey champion, get up, see the train is here),” he says, teasing Balia.
As darkness falls outside and lights come on inside the coach, the doctors lapse into anecdotes about Jagga and Balia. Each has a story.
Dr Rath, Professor, Department of Neuroanaesthesiology & Critical Care, AIIMS, who is also from Odisha, says he would get calls from home asking about the twins. “For a doctor, it’s a once-in-a-lifetime experience. We got to learn several techniques… The two were injected anaesthesia in nine stages during the surgery. Whatever complications we anticipated, they faced all. Fighting the odds, the children are now going back home.”
Dr Gupta talks about how difficult it was initially to distinguish between the twins. “They were identical, but for their moods. Whila Jagga was always smiling, Balia used to cry the entire day.”
Apart from feeds, Balia is also monitored for his temperature, heart rate and pulse every two hours. Noting down the temperature in a chart titled “6010”, Dr Kumar, a resident doctor with the Department of Paediatrics, AIIMS, says, “Last night, he had 100.8 degrees fever, but it came down after medicines.”
By 10 pm, it’s all quiet. Balia is sleeping with his mother as Jagga dozes in the next berth.
They get up the next morning in Odisha, the Rajdhani running past fields verdant after the rains. The family and doctors take account of the luggage and pack the things that are loose. Jagga gets into a new dress, a pink linen shirt provided by AIIMS with ‘Jagga’ written on it.
The train arrives at Cuttack at 3.30 pm. Immediately, a group of waiting journalists mob the family, trying to catch a glimpse of Jagga and Balia. A startled Jagga covers his ears to block out the commotion. A cart is parked on the platform to ferry the family to the gate, and they head for SCB Hospital accompanied by police and officers, in a convoy of an ambulance and four Innovas.
Jagga continues to look nervous through the 15-minute commute, and clings onto the staff from AIIMS. As they arrive, Ancy carries him through another crowd, gathered at the gates, while Puspanjali has Balia in her arms.
As the twins are taken to the first floor of the trauma ICU, patients and hospital staff queue up to catch a glimpse. As Balia is laid down on bed No. 2, the AIIMS team begins explaining the medical history of the children to the set of doctors ready to take over from them.
“Odia mein baat karte ho (Do you understand Odia)?” asks a nurse trying to comfort Jagga. However, the child is unimpressed, and blocking his ears with his index fingers, clings on to Dr Kumar.
Done explaining Balia’s doses, Ancy walks up to Jagga and says,”Main jaa rahi hoon, Jaggu (I am leaving).” Instantly reaching out for her, Jagga urges her to take him in her arms and refuses to let go. Five minutes later, as the rest of the AIIMS team troops out, Ancy says a quiet bye to Balia, pointing to a red ball he seems to be fond of, and moves out.
The chirpy Jagga looks lost. Sitting next to Balia, he quietly watches his father shifting their bags, before running up to him. “Papa, chalo,” he says.
Dr Sudhanshu S Mishra, Professor, Head of Department of Neurosurgery at SCB Medical College, says they are happy to have Jagga and Balia back. “The team at AIIMS did a wonderful job. The children had been refused admission by AIIMS, Bhubaneswar, and several other hospitals… Now, we have to take care of Balia’s treatment.”
While AIIMS has provided medicines for the next six months, doctors at Cuttack feel a few of the drugs might have to be changed. “We will alter treatment depending on how Balia’s body responds. We will document the entire treatment so that we can handle more such critical cases,” says Dr Mishra.
The next day, families line up to meet the twin celebrities, knocking on their door at regular intervals. Among them is Sharat Rout from Paradeep, who is here with his family. “Please let us see Jagga-Balia at least once. We have come from so far. We have only seen them on TV,” he urges.
Surrounded by an appreciative crowd, Jagga responds enthusiastically as father Bhuyan tells him in English to point out his various body parts.
Looking at Jagga, tears well up in Puspanjali’s eyes again. As she comments about how fast her four-year-old is picking up things, a government officer sitting nearby says they would soon get him admitted to a school. “Jagga’s skin is sensitive right now,” the officer adds. But there are some things it will take him time to understand. Like when Ancy makes a video call, from Kerala, her home state, where she headed straight from Bhubaneswar — a rare break in all these years of looking after the twins. “Jaggu, kaisa hai (how are you)?” the nurse asks, as she introduces her son and daughter to him, saying, “This is my Jaggu.”
Smiling sheepishly, Jagga runs his fingers over the screen. Trying to touch his companion of two years, he mumbles, “Sittu, phone.”
Other such cases in India
* In 2002, a pair was separated at KIMS in Manipal, but only one of them survived.
* Hyderabad twins Veena and Vani, 17, abandoned by their parents, both daily-wage labourers, now live at a children’s home. AIIMS has ruled out surgery on them, saying it could end up crippling the twins.
* In 1996, AIIMS unsuccessfully tried to separate Patna’s Sabah and Farah, now 23. The Bihar government supports them financially. American neurosurgeon Benjamin Carson has said he could separate them, but the family has refused.
Separated craniopagus twins across globe
* Rodney and Roger Brodie, separated in 1952: Born in Rock Island, Illinois, US, in 1951, they were the first craniopagus twins in the world to be separated successfully. While both Rodney and Roger initially survived the surgery, Roger did not regain consciousness and died 34 days later. Rodney suffered from neurological damage. Because his skull was never closed, he wore a helmet until his death at age 11.
* Ladan and Laleh Bijani, separated in 2003: Born in Iran in 1974, the sisters were operated upon at the age of 29 in Singapore. However, their brains were fused and the two shared a major vein, leading to complications and their deaths soon after.
* Patrick and Benjamin Binder, separated in 1987: Born in February 1987 in Germany, they were separated when they were seven months old at the Johns Hopkins Hospital in the US. Though both survived the surgery, they were left severely disabled.
* Ahmed and Mohamed Ibrahim, separated in 2003: Born in Egypt in 2001, the boys were successfully separated at the age of 2 in Dallas, Texas, in a 34-hour surgery.
* Emilie and Elisbeth Stoll: Known collectively as ‘Emilisa’, they were born in Vilbel, Germany, in January 1912, joined at the head, facing opposite directions. They died at six months.
* Lori and Dori ‘George’: Born as Lori and Dori Schappell in September 1961. Dori later took on the name Reba and then George, saying he identified as a male. Now 56, he performs as a country singer, while Lori acts as his facilitator and works at a laundry, arranging her workload around his singing commitments.
* Tatiana and Kristina Hogan: They were born in October 2006 in Vancouver, Canada, with their heads joined at the top, back, and sides. Doctors gave them a 20% chance of survival. In August 2007, they ruled out a separation saying it could kill or paralyse one or both the girls.