Sakthi’s story

We found out in the eighth month, on a routine antenatal scan. The words they used were ones we had never heard: a Vein of Galen Malformation. A tangle of blood vessels in our baby’s brain.

Then came the part nobody warns you about. Not the diagnosis — the searching. We did not know who could treat this. We did not know if anyone in India could treat this. And every day we spent looking was a day we were not sure we had.

In the end I did the only thing I could think of. I wrote an email to Dr Alejandro Berenstein in New York — one of the first doctors in the world to treat this condition. A stranger, on another continent, with no particular reason to reply to me.

The doctor who could save our daughter was in our own city. And the only way we found him was an email to a legend in Manhattan.

Dr Paramasivam planned her treatment. She went through several rounds of embolisation — the malformation is closed off from inside the blood vessels, not by opening the skull — and later she needed a shunt, after a bleed. It was long, and it was frightening, and it worked.

I have thought a great deal about the luck in that story. Not the medicine — the medicine was skill. The luck was that I happened to write to the right person, who happened to know where his former colleague had gone.

No parent should have to be lucky to find out that their child can be saved.

That is the whole reason this foundation exists. We are trying to be that email — for everyone, straight away, without them needing to know that Dr Berenstein is on the other end of it.