Born July 5th, 2006
I found out I was expecting my third child in December 2005 and was frankly a little shocked, I had one boy and one girl and thought our family was complete, our new arrival was due the end of August 2006. My pregnancy progressed well until June 06 when I developed pre eclampsia, on a routine scan to check the babies growth they found an abnormality which I was eventually told was a vein of galen malformation. We were devastated, our eldest son had had a brain haemorrhage at birth and had disabilities, we never thought that lightening could strike twice, but it did!
Less than a week after the diagnosis, Druhan was born by emergency caesarian 7 weeks premature on 5th July at 1438, weighing just 3lbs 13 oz, he was immediately taken to the neonatal unit and I never saw him again until he was a day old. Before I laid eyes on him again they told me his heart was failing and that he was probably going to die. His heart failure turned out to be a small defect called a PDA which spontaneously improved within days.
Over the coming weeks he got bigger and stronger but there was still no clear plan for treating the VOG and worse still he began to develop hydrocephalus, in sheer desperation I went on line and did my millionth search on VOG and eventually found this website. I sent email straight away and eventually spoke to Lynn who told me all about NSCAG and treatment options. Thank god we spoke to her she put us in touch with all the right people. We spoke to NSCAG who told us that Great Ormond Street was our nearest treatment centre, I have to admit I was very reluctant to go there as I had heard about the centre in Paris and I wanted them to treat him despite the difficulties.
Early August we travelled down from Birmingham to London and met the team, I have to admit I was not confident in them at all and gave them a fairly hard time, but they were amazing, they listened to our concerns and gave us the option to be treated there or they would organise going to Paris. In the mean time Druhan had lots of reviews and an MRI scan.
We decided to stay in London, we trusted all the staff and found them all very approachable and knowledgeable and they tolerated my tantrums!
On August 16th 2006, Druhan had his first and what turns out to be his last embolisation at GOSH. He went to Intensive Care for a few days, where he was monitored very closely, we were then transferred to Starfish ward where he went from strength to strength and then after a week I finally took my little angel home, at nearly 2 months old.
Since then he seems to be doing well, he is growing really well and his development seems to be ok, he is smiling and laughing at his brother and sister and loves playing under his play gym.
We are due to be reviewed at GOSH soon and he is seen by our local paediatrician and a consultant opthamologist at Birmingham Children’s Hospital, as the hydrocephalus may have exerted some pressure on his optic nerve and created some damage. It is hoped that Druhan will never need any more embolisations.
I cannot put into words how grateful we are to all the team at GOSH, in particular to Stefan Brew , Clare Toolis and all the nurses on Starfish ward who made an unbearable time in our lives bearable.
This website was a great source of comfort, knowing that we weren’t the only ones going through this and that children did live and lead happy normal lives gave us hope and courage to carry on fighting for our little boy. To anyone reading this who has just been diagnosed my advice is to never give up and get in touch with NSCAG as soon as possible, if we had known about the treatment centres sooner it would have saved us weeks of uncertainty and turmoil.
We are happy to talk to or email anyone who needs someone to talk to .