© The Indian Express Pvt Ltd
Tags:
Journalism of Courage
Sarla Salunkhe thought her six-year-old son Ritesh (name changed) was acting up and avoiding homework. “I had erased some words and asked him to rewrite them. I assumed he was angry and that’s why he was not holding the pencil properly,” recalls the mother, a school teacher at a Pune Municipal Corporation-run school. Little did she know that her son, a kindergarten student, was showing signs of limb paralysis associated with the Guillain-Barré Syndrome (GBS) and would not only require hospitalisation but intensive care with ventilator support.
“These have been the most harrowing days of our lives,” says Sarla, while sitting by her son’s bedside at Pune’s Ankura hospital. The hospital is among 25 others in the city that has been treating more than 100 patients of the Guillain-Barre Syndrome (GBS) ever since the beginning of the outbreak on January 9 this year. It is a rare autoimmune neurological disorder, brought on by the body’s immune response to bacteria or virus and is seen in patients after a bout of infection, in this case because of ‘Campylobacter’ bacteria. This is found in contaminated food and water and causes diarrhoea.
“Usually, the immune system fights back the microbe but in some patients, it malfunctions and mistakenly attacks and damages the nervous system, particularly the peripheral nerves linked to limb movements,” says Dr Umesh Vaidya, head of Neonatology, Ankura Hospital.
Sarla first sensed something was off when Ritesh was unable to get up from bed and use the toilet. Then during playtime with his younger brother, he could not get up after a fall. “All these symptoms began on January 14. A week before that he had fever and diarrhoea after eating some samosas from a nearby shop. “In fact, everyone in the family had a bout. However, my son developed a fever. He stabilised and almost a week later, he complained of pain in the legs and refused to attend his dance classes. He could not bathe himself, I cleaned him up,” says Sarla.
Sarla and her husband Sunil admitted him to a local hospital at Kalewadi phata and then, based on their physician’s advice, shifted him to Ankura Hospital where doctors diagnosed him with GBS after confirmatory tests like MRI and a nerve conduction velocity test, which shows how quickly electrical impulses travel through a nerve.
Usually, patients complain of a rapid onset of weakness in the lower limbs, then upper limbs and breathing difficulties, explains Dr Vishrut Joshi, paediatric intensivist. “My son lay listless on the ICU bed. He could not lift his legs or arms and soon was unable to swallow and speak. Then he could not breathe,” recalls Sarla.
GBS results in progressive weakness of the muscles responsible for breathing, particularly the diaphragm that helps us breathe in and out. Dr Joshi explains how weakness results in very shallow breathing. Weak respiratory muscles also result in a poor cough, making it difficult to clear airway secretions, increasing the risk of pneumonia. In severe cases, patients have respiratory failure and have to be ventilated.
Ritesh had to be intubated. A breathing tube was inserted through the mouth, allowing the ventilator to deliver oxygen directly to his lungs. “Can you believe how relieved we are now that the tubes have been taken out and my son is able to speak. He can now hold a glass and sip juice through a straw,” says Sarla.
Dr Vaidya says that GBS can occur at any age. “It is primarily a condition that tends to show spontaneous recovery in most patients. However, complications can arise and mortality may occur if the patient develops serious respiratory complications or autonomic imbalances, when the autonomic nervous system, which controls key body functions that help you survive, malfunctions,” he adds.
In most cases, patients experience gradual improvement over three to six weeks. As per the National Institute of Neurological Disorder and Stroke, recovery can vary due to various factors, including the severity of initial nerve damage, patient’s age, how quickly the treatment was started and the individual’s overall health. That’s why some cases could take up to a year too. According to Mayo Clinic, about 80% patients can walk independently six months after diagnosis, 60% fully recover motor strength one year after diagnosis and only about 5 to 10% take longer.
The key aspect of recovery is providing good supportive care, which includes preventing infections, managing pain and addressing potential complications such as drops in blood pressure. Ritesh was given supportive ventilation and medicines like intravenous immunoglobulin (IV-IG) after which his limb functions started improving. “Since medical interventions cannot fully control the recovery process, physiotherapy plays a crucial role,” Dr Vaidya adds.
Recovery timelines can vary, and while they cannot be precisely controlled, Ritesh’s progress has been encouraging. He has regained movement in his limbs, has started swallowing and no longer requires ventilator support. His muscles are gradually recovering. Now doctors are thinking of helping him walk with support or a walker. “It’s a long haul but I am relieved that my child smiled and spoke to me after 12 days. He will live again,” says Sarla.
