Brain Tumour in Children: A Malaysian Parent’s Guide

There is nothing that prepares you for hearing that your child has a brain tumour. In over 18 years of neurosurgical practice, I have seen what this moment does to families. The fear is absolute. The questions come faster than anyone can answer them.

This page is my attempt to answer the most important ones — clearly, honestly, and without the kind of clinical distance that makes already difficult information feel even more overwhelming.

How Common Are Brain Tumours in Children?

Brain and spinal cord tumours are the second most common childhood cancer after leukaemia, and the most common solid tumour in children. In Malaysia, as globally, they account for approximately 20–25% of all paediatric cancers.

The important difference from adult brain tumours: many childhood brain tumours are highly treatable. Medulloblastoma, the most common malignant paediatric brain tumour, has an overall survival rate exceeding 70–80% with modern multimodal treatment. This is not the death sentence it once was.

Early diagnosis and surgery at a centre with neurosurgical expertise are the two factors that most influence outcome. That’s why finding the right surgeon matters — and why you’re right to be doing your research.

Types of Brain Tumours in Children

Medulloblastoma

The most common malignant brain tumour in children. Arises in the cerebellum — the part of the brain at the back that controls balance and coordination.

Symptoms: Headaches (especially on waking), vomiting, unsteady gait, clumsiness, vision changes. Treatment: Surgical resection → radiation therapy → chemotherapy. The goal of surgery is maximum safe resection — the more tumour removed, the better the outcome. Prognosis: 70–80% five-year survival for standard-risk patients with modern protocols.

Ependymoma

Arises from the ependymal cells lining the ventricles (fluid-filled spaces) of the brain. Can occur in the posterior fossa (infratentorial) or the cerebral hemispheres (supratentorial).

Symptoms: Hydrocephalus (fluid build-up causing raised pressure), headache, nausea, vomiting. Treatment: Surgery is the cornerstone — extent of resection is the most important prognostic factor. Radiation follows. Prognosis: Varies significantly with grade and extent of resection.

Astrocytoma (Pilocytic & Diffuse)

The most common brain tumour type across all ages, including children. Ranges from pilocytic astrocytoma (Grade I — frequently curable with surgery alone) to diffuse intrinsic pontine glioma (DIPG — a brainstem tumour with very limited surgical options).

Pilocytic astrocytoma: Often cystic, well-circumscribed, frequently in the cerebellum. Excellent prognosis after complete resection. Diffuse astrocytoma: More infiltrative. Management depends on location, grade, and molecular profile.

Craniopharyngioma

A benign but locally aggressive tumour arising near the pituitary gland. Despite being Grade I, it causes significant problems — visual impairment, hormonal deficiency, and obesity from hypothalamic involvement.

Treatment: Surgery ± radiotherapy. Requires endocrinology co-management for long-term hormone replacement.

DIPG (Diffuse Intrinsic Pontine Glioma)

The most challenging paediatric brain tumour. Arises in the pons — a critical part of the brainstem controlling breathing, heart rate, and swallowing. Biopsy is now recommended to guide molecular-targeted trials. Radiation remains the standard of care.

I mention DIPG here because families deserve an honest conversation about it. Surgery for DIPG is not the answer. But clinical trials are generating real hope.

Warning Signs: When to Bring Your Child to a Neurosurgeon

Children’s brains are resilient and adaptive — which means tumours can grow to significant size before symptoms become obvious. Do not wait if you notice:

In infants and toddlers:

• Bulging fontanelle (soft spot)
• Rapid increase in head circumference
• Irritability, high-pitched cry
• Persistent vomiting without GI cause
• Developmental regression (losing milestones already gained)
• Sunset sign — eyes deviated downward

In older children:

• Morning headaches that ease after vomiting
• New-onset seizures
• Gradual loss of coordination, clumsiness, frequent falls
• Vision changes or squint developing suddenly
• Personality or behaviour changes
• Declining school performance
• Weakness in one limb

If your child’s GP has not referred them to a neurologist or neurosurgeon after these symptoms — ask for the referral directly.

The Diagnosis Process

MRI Brain with and without Contrast

The essential first investigation. In children, this requires sedation or general anaesthesia to keep them still long enough for a quality scan. A paediatric anaesthetist manages this — it is safe and routine.

MR Spectroscopy

Additional sequences that map the metabolic fingerprint of the tumour — helps distinguish tumour types before biopsy.

Ophthalmology Assessment

Vision testing and fundoscopy to check for papilloedema (swelling of the optic disc — a sign of raised intracranial pressure). Essential before surgery.

Endocrinology Work-Up

For tumours near the pituitary or hypothalamus — cortisol, thyroid, growth hormone levels before surgery.

Histopathology & Molecular Profiling

After surgical resection or biopsy, the tumour tissue is analysed. Modern paediatric neuro-oncology is molecularly driven — the 2021 WHO classification identifies over 100 distinct tumour entities based on genetic markers, not just microscopy.

The Operation: What Parents Need to Know

Before Surgery

I will meet with you — both parents, if possible — to explain exactly what I will do, what the risks are, and what to expect. I show you the MRI. I point to the tumour. I explain the approach. Nothing is hidden.

Your child will have pre-operative blood tests, anaesthetic assessment, and a baseline neurological examination. In some cases, a ventriculoperitoneal (VP) shunt is placed before the main surgery to relieve hydrocephalus.

During Surgery

Paediatric brain tumour surgery is performed under general anaesthesia with continuous neuromonitoring. Surgery may last between 3–8 hours depending on tumour size, location, and complexity. You will receive updates from the nursing team during the procedure.

I use frameless stereotactic navigation for all craniotomies — this allows real-time tracking of instrument position against the pre-operative MRI, maximising both precision and safety.

After Surgery

Your child will be monitored in the neurological ICU or high-dependency unit for the first 24–48 hours. Early mobilisation is encouraged as soon as they are stable. Most children tolerate brain surgery with remarkable resilience.

The histopathology result takes 7–10 working days. This is the report that determines the next stage of treatment.

After Surgery: The Multidisciplinary Team

Brain tumour treatment in children is never a single-doctor decision. Every case should be discussed at a paediatric neuro-oncology multidisciplinary team (MDT) meeting involving:

• Paediatric Neurosurgeon — for surgical planning and post-op follow-up
• Paediatric Oncologist — for chemotherapy planning
• Radiation Oncologist — for radiotherapy (if indicated; avoided under age 3 where possible due to developing brain concerns)
• Neuro-Radiologist — for imaging review and response assessment
• Paediatric Endocrinologist — for hormone management
• Physiotherapy & Occupational Therapy — for rehabilitation

I coordinate with paediatric specialists at KPJ Tawakkal and through our referral network to ensure this coordinated care is in place for every child I operate on.

Prognosis: Honest Answers

I believe parents deserve honest information — not false reassurance, and not unnecessary despair.

These are population statistics. Your child is not a statistic. Outcomes vary significantly based on tumour location, extent of resection, molecular subtype, and the treatment team. What I can tell you is that the single modifiable factor most within our control is the quality of the initial surgery. Maximum safe resection — done right the first time — gives the best foundation for everything that follows.

Second Opinions Are Not Just Acceptable — They Are Encouraged

If your child has been diagnosed with a brain tumour and you are not certain about the surgical plan, please seek a second opinion. I welcome second-opinion consultations. I also regularly provide second opinions on cases first seen elsewhere.

In paediatric neuro-oncology, the stakes are too high for anything less than complete certainty.

A Note to Families

I have operated on children as young as several months old. I have sat with families through some of the most frightening experiences a parent can face. What I know for certain is that having complete, accurate information reduces fear — not increases it.

Ask every question you have. Bring a notebook. Bring your partner, your parents, whoever you trust most. My clinic time belongs to you.

Book a Consultation

WhatsApp the clinic: +6011 3723 5061 Book online: KPJ Tawakkal Appointment Portal Call the clinic: +603-4026 7777 ext 5099

KPJ Tawakkal Specialist Hospital, Jalan Pahang Barat, Kuala Lumpur

For referring paediatricians and physicians: GP & Specialist Referral Information →

This page is for educational purposes and does not constitute medical advice. Every child’s tumour is biologically unique. All diagnosis and treatment decisions must be made in direct consultation with a qualified paediatric neurosurgeon following review of the child’s specific imaging and clinical history.