Start here
You have just been told.
Take a breath. This condition can be treated, and children who have it grow up.
You have probably already searched for it, and you have probably already read something terrifying. Most of what is written about a Vein of Galen Malformation online describes the sickest babies, or describes how things were thirty years ago. Neither is your child.
The first thing to understand
The treatment is called embolisation. A doctor passes a very fine tube up through a blood vessel and closes the abnormal connections from the inside. The skull is not opened. It is usually done in stages, over more than one procedure.
The person who does it is an interventional neuroradiologist. There are very few of them in India, and this is not something a general neurosurgeon should attempt.
The questions to ask, before you agree to anything
You are allowed to ask these. A good doctor will not mind. Write them down and take them with you, because you will not remember them in the room.
- How many Vein of Galen Malformations have you personally treated? (Not brain AVMs. This one.)
- Is there an interventional neuroradiologist here, or would we be referred elsewhere?
- Does this hospital have a paediatric neuro-intensive care unit?
- What is the plan if my baby needs treatment urgently, and what if we wait?
- Can you write down the diagnosis and the plan, so I can get a second opinion?
Two things worth saying to your doctor
We are not doctors, and these are not instructions. They are two things that are well described in the medical literature, that families are often not told, and that you are entitled to raise.
If your baby has not been born yet
Where and how your baby is delivered matters, because the first hours can matter. Ask to be referred to a centre that can treat this before the birth, not after it — a transfer is much harder with a sick newborn than with a pregnancy.
If your baby is likely to need treatment in the first days of life, it is worth asking the team about umbilical arterial line access at birth. It has to be planned in advance, and it can make the treatment easier.
And if treatment is not needed immediately, it is often needed by around four months. This is not something to leave and see.
Nothing you did caused this
This is the sentence we most want you to read, and it comes from Great Ormond Street Hospital: a Vein of Galen Malformation is not caused by anything a mother did or did not do during pregnancy. It forms in the first weeks, long before anyone knows. Most cases have no identified cause at all.
Not every story is a success story. But every child with this condition is valued, whether or not they are still with us — and if you have lost your child, we are here for you too.
You are not alone.
Talk to us
One of us has been exactly where you are standing. We will not give you medical advice, but we can help you work out where to go and how to pay for it — and we can listen.
If your baby is unwell right now, do not wait for us. Go to a hospital and ask them to speak to a paediatric interventional neuroradiologist. Then message us.