For clinicians
Vein of Galen Malformation
You may never see one. If you do, it will probably be the sickest neonate of your week, and the diagnosis is not obvious. This page is what we wish the doctor who saw our daughter had been handed.
About this page. Every clinical statement here is drawn from the published, peer-reviewed literature, and each is linked to its source below. It is written to help you recognise a Vein of Galen Malformation and refer it — not to replace specialist assessment.
When to suspect it
Unexplained high-output cardiac failure in a neonate
With a structurally normal heart. This is the classic presentation and it is routinely mistaken for congenital heart disease.
A cranial bruit
Auscultate the anterior fontanelle and the orbits. It costs nothing and it is frequently the finding that cracks the case.
Head circumference crossing centiles
Macrocephaly with or without overt hydrocephalus, in an infant.
A bulging or tense fontanelle
With prominent, dilated scalp and facial veins.
Developmental delay or seizures in an older infant
With a large head. The late presenters are the ones India is missing.
What to image
Cranial ultrasound with colour Doppler through the anterior fontanelle will usually show it, and it is available almost everywhere. It is a reasonable first test in any neonate with unexplained heart failure and a normal echo.
MRI with MR angiography characterises it. Catheter angiography is done by the interventional team as part of treatment planning — it is not a screening test.
Where to refer
This is treated by endovascular embolisation, usually in stages, by an interventional neuroradiologist or neuro-endovascular surgeon. It is not open surgery, and it is not a case for a general neurosurgical list.
We list a centre only after we have confirmed it by telephone with the department itself — the named consultant, the department’s direct number, the referral route, and the date we last confirmed it.
That is a deliberately high bar, and we hold to it: we do not publish a hospital’s name until we have spoken to that department ourselves. If you have a child in front of you now, message us or email contact@vogmindiafoundation.org and we will tell you what we know.
If you treat this condition
We would like to hear from you, and we would like to list you. We are a parent-run foundation, not a referral business — we take no fee from anyone, and we have no commercial relationship with any hospital.
We would also like to know something nobody in India currently knows: how many of these children there are. There is no Indian registry, no incidence figure, and no natural-history data. If you have treated cases, we would very much like to talk.
Sources
- Berenstein A, Paramasivam S, et al. Vein of Galen Aneurysmal Malformation: Advances in Management and Endovascular Treatment. Neurosurgery, 2019.
- Paramasivam S. Hydrocephalus in Vein of Galen Malformations. Neurology India, 2021.
- Lecce F, et al. UK national cohort of neonatal vein of Galen malformation, 2006–2016.
- Great Ormond Street Hospital — Vein of Galen malformation