Bengaluru Hospital Successfully Treats Toddler’s Rare Genetic Condition

fast Summary:

• A three-year-old boy suffering from multiple rare and severe conditions, including tuberous sclerosis, refractory seizures, and Paediatric Acute Respiratory Distress Syndrome (PARDS), received life-saving care at Rainbow Children’s Hospital in Bengaluru.
• Tuberous sclerosis complex is a rare genetic condition affecting about one in 100,000 individuals in India. PARDS affects approximately 6% of patients requiring mechanical ventilation in Paediatric Intensive Care Units (PICU).
• The child was brought to the hospital with fever, tachypnea, and profound dyspnea earlier this year and underwent intensive treatments such as mechanical ventilation due to acute type 1 respiratory failure. His seizures required high doses of anti-epileptic medications.
• over six weeks of PICU treatment, complications included multiple spontaneous pneumothoraxes causing near cardiac arrest events, recurrent infections like mycoplasma and adenovirus, and frequent re-intubation after extubation attempts due to neurological regression.
• Doctors managed his condition with high-frequency oscillatory ventilation instead of ECMO per parental decision due to neurological concerns. Post-discharge care included additional hospital admissions for tracheostomy closure-related issues.

Indian Opinion Analysis:
This case highlights the immense challenges posed by managing rare genetic disorders compounded by secondary complications within Indian medical infrastructure. The prosperous treatment at Rainbow Children’s Hospital demonstrates India’s growing capacity for pediatric critical care involving advanced techniques such as invasive ventilator support and personalized interventions under complex scenarios.

With tuberous sclerosis being rare but impactful on families nationwide-as indicated by prevalence data-and PARDS complicating significant portions of pediatric ICU cases globally and locally alike-success stories like this offer hope while underscoring gaps requiring long-term follow-up systems even years post-intervention regarding access affordability & smooth triage/readmissions seamlessly bridging mid-post-Recovery Resources input matching tall unmet families ongoing demand shaping equivalents nuanced future policies ahead national+urban stretches ongoing depth spectrum.
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