A three-year-old boy suffering from tuberous sclerosis, refractory seizures, alongside severe Paediatric Acute Respiratory Distress Syndrome (PARDS) has got a new lease of life at Rainbow Children’s Hospital, Bannerghatta Road in Bengaluru.

This was one of the most challenging, high-risk cases, where the child’s rare genetic condition demanded aggressive care and seamless teamwork. In India, the prevalence of tuberous sclerosis complex is about one in a lakh individuals, and PARDS affects approximately 6% of all patients requiring mechanical ventilation in Paediatric Intensive Care Unit (PICU). 

Challenging, high-risk case

The boy was brought to the hospital earlier this year with fever, tachypnea, and profound dyspnea. Due to acute type 1 respiratory failure, he was put on mechanical ventilation. His condition was further complicated by difficult-to-control seizures requiring high doses of repeated anti-epileptic drugs.

The child received continuous intensive care and invasive mechanical ventilation in the PICU. Although he was extubated after seven days, he experienced significant respiratory and neurological regression which necessitated re-intubation four times over the course of six weeks, said doctors.

He also suffered multiple spontaneous and tension pneumothoraxes — two of which caused peri-cardiac arrest and recurrent infections including mycoplasma, enterovirus, and adenovirus. ECMO was considered but not performed due to his neurological status and parental decision. Instead, he was managed with high-frequency oscillatory ventilation, doctors said.

“This was one of the most challenging cases we have encountered in our PICU,” said Anupam Jaiswal, PICU Lead Consultant at the hospital. “The child faced multiple, simultaneous life-threatening complications, and every decision had to be swift, precise, and personalised,” the doctor said.

Although the child was discharged a couple of months back, he needed three additional hospital admissions over time for ongoing care and device problems for tracheostomy closure.