What is infantile fibrosarcoma? How Bengaluru doctors saved a baby's arm from rare cancer
Experts successfully performed what is believed to be India's first neonatal limb-salvage surgery for infantile fibrosarcoma, preserving a baby's arm from a rare tumour
A baby girl, diagnosed with a rare infantile fibrosarcoma at 28 days old, has undergone what is believed to be India's first successful neonatal limb-salvage surgery for this condition, with doctors at Bengaluru's HCG Cancer Centre preserving her right arm through a series of complex procedures. The aggressive tumor, which rapidly grew to engulf most of her forearm and hand, presented significant challenges due to its proximity to vital nerves and blood vessels, leading multiple hospitals to recommend amputation. Utilizing advanced techniques including embolization, 3D-printed models for surgical planning, specialized micro-instruments, and microvascular free-flap reconstruction, surgeons meticulously removed the tumor while safeguarding the limb's function. Further treatment with Entrectinib, a targeted therapy for the identified NTRK gene fusion, has resulted in no recurrence nearly 18 months post-surgery, allowing the child to regain strength and normal growth, underscoring the impact of multidisciplinary care and precision oncology in treating rare pediatric cancers.
A baby girl, diagnosed with a rare infantile fibrosarcoma at 28 days old, has undergone what is believed to be India's first successful neonatal limb-salvage surgery for this condition, with doctors at Bengaluru's HCG Cancer Centre preserving her right arm through a series of complex procedures. The aggressive tumor, which rapidly grew to engulf most of her forearm and hand, presented significant challenges due to its proximity to vital nerves and blood vessels, leading multiple hospitals to recommend amputation. Utilizing advanced techniques including embolization, 3D-printed models for surgical planning, specialized micro-instruments, and microvascular free-flap reconstruction, surgeons meticulously removed the tumor while safeguarding the limb's function. Further treatment with Entrectinib, a targeted therapy for the identified NTRK gene fusion, has resulted in no recurrence nearly 18 months post-surgery, allowing the child to regain strength and normal growth, underscoring the impact of multidisciplinary care and precision oncology in treating rare pediatric cancers.
A baby girl, diagnosed with a rare infantile fibrosarcoma at 28 days old, has undergone what is believed to be India's first successful neonatal limb-salvage surgery for this condition, with doctors at Bengaluru's HCG Cancer Centre preserving her right arm through a series of complex procedures. The aggressive tumor, which rapidly grew to engulf most of her forearm and hand, presented significant challenges due to its proximity to vital nerves and blood vessels, leading multiple hospitals to recommend amputation. Utilizing advanced techniques including embolization, 3D-printed models for surgical planning, specialized micro-instruments, and microvascular free-flap reconstruction, surgeons meticulously removed the tumor while safeguarding the limb's function. Further treatment with Entrectinib, a targeted therapy for the identified NTRK gene fusion, has resulted in no recurrence nearly 18 months post-surgery, allowing the child to regain strength and normal growth, underscoring the impact of multidisciplinary care and precision oncology in treating rare pediatric cancers.
A baby girl, who was diagnosed with one of the rarest soft-tissue cancers seen in newborns when she was 28 days old, has become what doctors believe is India's first successful neonatal limb-salvage case for infantile fibrosarcoma.
After multiple hospitals advised amputation, surgeons at Bengaluru's HCG Cancer Centre preserved both the baby's life and her right arm through a series of complex procedures spanning nearly a week.
The child, born with a small swelling on her right forearm, saw the mass grow rapidly within days into an 11.3 cm x 9.8 cm tumour that engulfed almost her entire forearm and part of her hand. By the time she reached the hospital, she had low haemoglobin, a rapidly enlarging fungating tumour and severely compromised limb function.
What made the surgery complicated?
The case was particularly challenging because the tumour had encased major nerves and blood vessels in the tiny forearm of the newborn, making surgery extraordinarily difficult.
"This was not merely a surgery but a race against time. Every stage required balancing cancer clearance with preservation of the baby's future hand function, while working around blood vessels and nerves that were only a few millimetres wide," said Dr Pramod S. Chinder, Director and Head of Orthopaedic Oncology at HCG Cancer Centre.
What is Infantile Fibrosarcoma?
It is an extremely uncommon soft-tissue cancer in infants, with an estimated incidence of around 0.3 per 100,000 population. Although considered aggressive because of its rapid growth, it is one of the few paediatric cancers where limb preservation is often possible if treated early at specialised centres.
Genomic testing revealed that the tumour carried an NTRK gene fusion, a rare genetic alteration that fuels uncontrolled tumour growth. The finding helped doctors tailor treatment and later initiate targeted therapy using Entrectinib, an NTRK inhibitor, to reduce the risk of recurrence.
Because of the baby's age and the tumour's rich blood supply, doctors opted for a carefully staged approach.
The first step involved super-selective embolisation to block blood flow to the tumour and minimise life-threatening bleeding during surgery. The newborn was then placed under an intricate neonatal anaesthesia protocol where she was monitored for temperature regulation, haemodynamics and micro-dosing throughout the lengthy procedure.
Surgeons subsequently undertook a 7-8 hour tumour resection, using 3D-printed anatomical models, Digital Twin technology, MRI and CT-based virtual planning, and specialised micro-instruments to remove the tumour while preserving critical nerves and blood vessels.
Two days later, plastic and reconstructive surgeons performed the youngest microvascular free-flap reconstructions reported globally. Tissue from the baby's thigh was transplanted to the forearm and connected through microscopic blood vessels to restore circulation and preserve future hand function.
"The success of this surgery reflects the importance of multidisciplinary planning. No single speciality could have achieved this outcome alone," Dr Chinder said.
Following surgery, the child received Entrectinib, an NTRK-targeted therapy considered safe for paediatric use. According to the hospital, nearly 18 months after surgery, she has shown no evidence of recurrence, retains her limb, is steadily gaining strength and is growing like any other child. For the parents, watching their daughter move her fingers again was, they said, "a miracle beyond words."
The treatment cost approximately ₹30-35 lakh.
Experts say the case highlights how advances in precision oncology, genomic diagnostics, 3D surgical planning and targeted therapies are transforming outcomes even in extremely young patients.
Dr Chinder urged parents not to lose hope after a diagnosis of rare childhood cancers. "Parents should seek care at specialised centres with expertise in managing complex paediatric sarcomas. Early referral can make the difference between amputation and limb preservation," he said.