Born June 13th, 1996
He was a perfect baby, an absolute angel, but looking back now, all the signs were there that all was not well. From being a very healthy birth weight Louis soon dropped down two lines on his centile chart, and he slept most of the day. He hated to crawl but we taught him how, and he was walking at 11 months, although his balance wasn’t brilliant. He was very calm and quiet and didn’t speak, but he had ‘glue ear’ so it wasn’t surprising. By the age of two he wasn’t sleeping so much and was reaching all his milestones. However, during a visit to our GP regarding eczema, he expressed concern over Louis’ head size and the prominent veins on his forehead. When measured, his head circumference went off the top line of the centile chart. Next day we were referred to our local hospital who told us there was nothing to worry about! Life carried on as normal and Louis started school at four and a half years old.
I had known for some time that Louis had a whooshing noise inside his head which could be heard if you put your ear to his temples. Because of this I went to my GP again in March 2001, when Louis was nearly five years old, we were referred to Great Ormond Street. Eventually the diagnosis of a Vein of Galen Malformation was made in October 2001. His heart is enlarged and working very hard, but is coping well, and he has mild hydrocephalus. We have been told it is amazing he hasn’t suffered any real symptoms.
Louis’ first embolisation was carried out by Prof Lasjaunias in Paris in March 2002 and was a great success. He was actually back at school just five days later! He is much more lively, has better concentration, is doing really well at school and says the noise inside his head has gone. His second embolisation will be in September 2002.