All the doctors were back from their morning rounds to have lunch. That is the time when they can laugh at each others’ jokes, plan classes for their students, and discuss issues of their patient.
Dr Jeevan (name changed) was almost 30 minutes late for his food that day. The rest of the group was joking about him as everyone knew how he grabs his bread, both pieces together when he is hungry. But there was something unusual about Dr Jeevan that day. He sighed and told everyone that he had to ventilate a 15-year-old boy, Sangharsha (name changed), who had come from very far. The boy was diagnosed with Guillain-Barre Syndrome (GBS).
GBS is a rare disorder in which body’s immune system attacks its own nerves, causing paralysis of the whole body. Paralysis starts in the feet and gradually ascends upwards and involves the upper limbs. At times, it also involves respiratory muscles and the patient is not able to breathe and requires mechanical ventilation. The exact cause of this illness is not known but it is often preceded by an infectious illness such as a respiratory infection or diarrhea.
There is no cure for GBS but a drug called intravenous immunoglobulin (IVIG), if given at an early stage of illness, can speed recovery and reduce the severity of the illness. Most of the time patients will be able to walk independently in six months. In Sangharsha’s case, his paralysis was very rapid. Mechanical ventilation alone would not be enough and IVIG was very expensive, about Rs 80,000 a day and had to be given for five days, for a total cost of Rs 400,000. There are also other added costs for treatment in the intensive care unit.
Dr. Jeevan was feeling helpless and at the same time guilty for ventilating Sangharsha. He knew without IVIG and with only a mechanical ventilator, it would be very difficult to save Sangharsha. Sangharsha’s father is a farmer. They come from a small beautiful village in Dhading around 50 kilometers from Kathmandu, a three-hour trek from the nearest bus stop.
He has three elder sisters. When Sangharsha and his father left for Kathmandu, his mother remained home to take care of the girls, their mud house, their millet farm yard, and a goat. When they arrived at the hospital, his father had only Rs15,000.
With that amount of money, treatment for Sangharsha would be next to impossible even at the government-owned Tribhuvan University Teaching Hospital (TUTH) where he was admitted. The healthcare system in Nepal has no insurance plans and treatment is almost always out of pocket. All the money had already been spent on other medicines and investigations, with none left for the life-saving drug, IVIG.
Though Sangharsha was under the care of experts, the treating doctors and his father already knew the painful reality. Keeping Sangharsha on a ventilator would just prolong his sufferings. Doctors had already concluded that he could not be saved.
While the doctors were discussing Sangharsha’s conditions, one of them blurted out “Poverty is killing more people than the diseases!” This is a cliché among the doctors, and no one in the room paid much attention.
In the corner of the room, another young doctor, Dr Asha (name changed), seemed oblivious to the discussions and was focused on her mobile. But unknown to the rest she had already started to look for funds.
She created a Viber group of her friends and family, and told them about Sangharsha’s condition and their treatment dilemma. To her surprise, within half an hour she had received many responses and before long enough money was raised for one day of IVIG. There was a ripple effect in this group.
Within the next 48 hours, there was an overwhelming response from near and far. Even a very small amount, when put together was sufficient enough for another two days of IVIG. There were discussions and disagreements as to whether spending so much money on IVIG for one child with such grim outlook was the right thing to do. Wouldn’t this money be better used for many other patients? The doctor who started this drive had many sleepless nights wrestling with this question, but she followed her heart and did not stop. She believed deeply that what she was doing to save this boy’s life was right.
Sangharsha received three doses of IVIG. He was breathing with the help of a mechanical ventilator and was awake and alert, but he could not speak. His only means of communicating was blinking his eyes. At times he felt bored and depressed. Once he needed his back scratched and no one understood him and his blinks. He cried in frustration and his tears did not stop for several hours. It was heart-wrenching to see him sob and unable to express himself.
The continuous noise of monitors and ventilators, the constant changing of very sick children in the beds next to him because they did not make it, and his doctors discussing his prognosis in low voices and sad faces made him feel even more distressed. He gradually started to lose hope.
After about six days, his father wanted to take him home, even though he knew his son wouldn’t be able to breathe if all the tubes were removed. Later it was discovered that the father had not eaten for days and was starving. He was not even sleeping, as he had to be constantly available to get medicines and other things necessary for his son’s care. The caring nursing staff planned for food, and some even shared their own tiffin. From that day on, he was not called during the night-time so he could get enough rest.
After about three days, the father was a little settled, but boredom was deeply grasping Sangharsha. To help keep him entertained and his mind active, doctors and nurses played Nepali movies in their phones for him. Sangharsha watched one particular Nepali movie almost 20 times!
Sangharsha was a fighter. After 15 days, he acquired a severe chest infection, requiring high doses of very strong antibiotics. This time money for his treatment came from Indra Jawahar Kosh, a private charity that provides financial support to under-privileged children.
The antibiotics and Sangharsha’s fighting spirit were effective and he came back from the brink. Also, while he was on the ventilator, the tube accidently came out several times, requiring multiple reinsertions. When multiple attempts for tube reinsertion are required, the child is less likely to make it, but this was not the case for Sangharsha. As with his recovery from the chest infection, Sangharsha proved once again that he was not giving up.
As the days passed by, the treating doctors, including Dr Jeevan and Dr Asha, became increasingly skeptical regarding his outcome despite his progress. Even on the third week of ventilation, his muscle strength was not improving and it appeared he would require longer ventilation.
Longer ventilation does not just mean more expenses but also increasing possibility of an adverse outcome. Whenever longer ventilation is required, the option is to perform tracheostomy i.e. creating an opening in the windpipe from outside and attaching the ventilator tubes through this opening. The outer opening is temporary and can be closed after few months. But the procedure itself can present many complications and, though very rare, can even take person’s life because of massive bleeding from the opening.
The father was counseled regarding the benefits and risks of a tracheostomy but chose not to allow the procedure. Although Sangharsha agreed to it, several attempts to convince his father failed. This created an ethical dilemma regarding further treatment.
Prolonging ventilation meant risking more infections and complications. One of the dreaded complications is the narrowing of the windpipe rendering the person unable to take enough air without any tubings. Even if Sangharsha were to recover from paralysis, because of the narrow windpipe he wouldn’t be able to breathe sufficiently on his own.
To everyone’s surprise it was found that the father was resisting because he had been told by a faith-healer to not make any disfigurement on the boy’s body.
Even with all the skills, knowledge, and resources of the health care system, sometimes deep-rooted superstitious beliefs challenge you and make you accept it despite no scientific basis. Since the father was going against the child’s best interest, Dr Asha took the role of an advocate for the child.
An expert in medical ethics was consulted and then it was decided to seek help from lawyers, hospital administrators, and police if the father did not comply with the treatment. But even here there was some disagreement among doctors because after a tracheostomy, very skilled and gentle care of the opening is required, and there was doubt as to whether Sangharsha’s father or mother would be able to do it at home.
Fortunately, on that very day the tube accidentally came out, the doctors decided not to put the tube in again and Sangharsha was given oxygen through a face mask. He seemed to tolerate it, and though his breathing was not optimal, he managed to get enough oxygen.
Everyone now was keeping his/her fingers crossed. Soon he started to move his little finger and after another five days he was slowly able to breathe on his own. His feeding tube, which was inserted through his nose when he arrived at the hospital, was taken out after 34 days and he gradually started to swallow. Though he was not able to move his limbs or body, now he could talk very clearly. On day 42, able to talk clearly though still unable to move his limbs or body, Sangharsha was finally discharged from the hospital.
Sangharsha was destined to live. For everyone in the hospital it appeared to be a miracle.
Miracles do happen but they don’t happen on their own. Help poured in from people all around. Dr Asha listened to her heart and did not think of the mountain of medical statistics against the odds, and raised enough funds for his successful treatment.
The multiple re-intubations did not cause any problem in his throat. Most times intubation and re-intubation cause lots of problems in patients, including making it difficult to regain their voice. But for Sangharsha, his father’s intuition, superstition rather, turned out to be a savior. Sangharsha could even sing when he left the hospital.
There seemed to be divine intervention and Sangharsha won the battle.
Dr Asha is still troubled about what she did. What if Sangharsha had not have made it? How would she have answered to all the generous people from Nepal and Nepalis in the US and other well-wishers who donated their hard-earned money at her request? What would she answer to those who told IVIG shouldn’t be used for this kid as the same amount of money could have saved many more lives? What would she have told his father if they had performed tracheostomy, and it had failed?
(The author works at the Department of Child Health, Tribhuvan University Teaching Hospital)