- Rare and high-risk case involving tuberous sclerosis
with refractory seizures and severe respiratory failure (PARDS). The
rarity and severity of his condition meant there was no room for
error.
- Multiple critical complications managed over 6 weeks,
including repeated respiratory collapses, pneumothoraces, septic shock,
and neurological deterioration
Bengaluru, September
06, 2025 : In a complex case within paediatric
critical care, physicians at Rainbow Children’s Hospital, Bannerghatta Road, have treated successfully a three-year-old boy from
Bengaluru who suffered from tuberous sclerosis, refractory seizures, alongside
severe Paediatric Acute Respiratory Distress Syndrome (PARDS). This was one of
the most challenging, high-risk cases, where the child’s rare genetic condition
demanded specialist, aggressive care and seamless teamwork, testing clinical
skill, judgement, and coordination to steer him through a perilous course to
recovery.
In India, the prevalence
of tuberous sclerosis complex is about 1 in a lakh individual, and PARDS
affects approximately 6% of all patients requiring mechanical ventilation in
Paediatric Intensive Care Unit (PICU). It is also important to highlight that
in severe cases of PARDS, the case mortality rate is 32% which is significant
in highlighting the importance of survival in this specific case.
The 3 year-old boy came
to the hospital earlier this year and presented with fever, tachypnea, and
profound dyspnea. Due to the acute type 1 respiratory failure, he was put on
mechanical ventilation due to PARDS. His condition was further complicated by
difficult-to-control seizures requiring high doses of repeated anti-epileptic
drugs. Without urgent and aggressive intervention, the risk to life was
extremely high.
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. 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.
“This was one of the
most challenging cases we have encountered in our PICU,” said Dr.
Anupam Jaiswal, PICU Lead Consultant, Rainbow Children’s Hospital, Bannerghatta.
“The child faced multiple, simultaneous life-threatening complications, and
every decision had to be swift, precise, and personalised.”
Dr. Prakash Vemgal,
Director of Pediatrics, Rainbow Children’s Hospital, Bannerghatta added; “The rarity and severity of his condition meant there
was no room for error. His survival and recovery reflect the importance of
integrated paediatric critical care, sustained multidisciplinary teamwork, and
the trust and cooperation of his family.”
In spite of extreme
complications like pneumonia, septic shock, and polyneuropathy, the multidisciplinary
team – consisting of paediatric intensivists, neurologists, pulmonologists, and
ENT specialists – coordinated with the family in close association to sail
through every crisis.
The child was discharged
couple of months back and has, since then needed 3 additional hospital
admissions over time for ongoing care and device problems for tracheostomy
closure. Following the acute crisis, he is on less seizure medications,
controlled seizures, breathing and speaking normally, eating and is able to walk
independently in the absence of home ventilation.
The family went through
significant emotional burdens and yet chose to work with the medical team which
greatly contributed to this child’s change in health. Today he is able to live
and enjoy an active and social life like his peers which is a remarkable change
from the repeated critical health episodes he was facing.
About Rainbow Children’s Hospital
Rainbow Children’s
Medicare Limited network comprises of 21 hospitals and 5 clinics in 8 cities,
with a total bed capacity of 2,035 beds. Our Paediatric services operating
under the brand “Rainbow Children’s Hospital” includes new born and Paediatric
intensive care, Paediatric multi-specialty services, Paediatric quaternary care
(including organ transplantation); whereas our women care services under
“Birthright by Rainbow” offers perinatal care services which includes normal
and complex obstetric care, multi-disciplinary fetal care, perinatal genetic
and fertility care along with gynaecology services.
Rainbow Children’s
Hospital built on strong fundamentals of a multidisciplinary approach with a
full-time consultant led clinical service along with 24/7 commitment
in a child centric environment. The company follows a hub-and-spoke operating
model where the hub hospital provides comprehensive outpatient, inpatient care,
with a focus on tertiary and quaternary services, while the spokes provide 24/7
emergency care, large outpatient services and comprehensive obstetrics,
Paediatric inpatient and level 3 NICU services. This model is successfully
operational at Hyderabad and is gaining traction in Bengaluru. The endeavour is
to replicate this approach in Chennai and across the National Capital Region.
Subsequently Rainbow intends to expand into tier-2 cities of Southern India.
Rainbow Children’s
Hospital embraces a unique doctor engagement model, where doctors work
exclusively on a full-time, retainer basis. The doctors work
in teams and have 24/7 commitment, which is particularly important for
children’s emergency, neonatal, Paediatric intensive care
services and to support Paediatric retrieval services. The Company also operates
the country’s largest Paediatric DNB training program in private healthcare,
offering post graduate residential DNB and fellowship
program. For more information, log on to: https://www.rainbowhospitals.in/
Media Contact:
Soumya P, Lead, Corporate
Communications
Rainbow Children’s
Hospital
Mobile – 8368543945 | soumya.p@rainbowhospitals.in
