Oliver was born on the 6th March 2002. We immediately noticed he was having feeding difficulties and they discovered a small murmur on his heart. However this was a minor problem and we felt confident there was nothing wrong.
His feeding and vomiting gradually became worse and after dozens of x rays, a barium meal, and a suspected mal-rotated gut they found nothing.
At eleven weeks he went for a routine check-up on his heart condition and the Cardiologist discovered an Arterial-Venous malformation. Within the hour he was under a CT scanner and they discovered the Vein of Galen Malformation. He was referred to Professor Lasjunais in Paris and had his first embolisation on August 6th. They discovered a large aggressive Vein of Galen aneurysm and his prognosis was poor. We were told Oliver would have to come back in 5 weeks to prevent brain damage occurring.
However Oliver has responded well to treatment and they were very positive about his progress. He had a second operation on September 5th and they have now managed to embolise 50% of the aneurysm. He will go back to Paris next March and we are far more positive about the future.
We are by no means out of the woods and are pragmatic and realistic but what I have learnt as a daddy is there is no deeper or purer love than the love you have for your child. It is that love and optimism that will push us forward
In September 2003 Oliver had two seizures and started to become sleepy. We asked our neurologist to tell Professor Lasjaunias in Paris(Neuro-radiologist). He failed to do so. Oliver continued to deteriorate and in January 2004 he developed what they thought was facial palsy. This was wrong. The paediatrician also thought it was an ear infection and not related to the VGM. After much persuasion they agreed on a MRI and found ischemic change. We had no idea they were not communicating any of these findings to Paris and therefore Lasjaunias had no idea. We arranged an emergency appointment and Pierre embolised on February 3rd. He discovered one of Oliver's main draining veins had occluded and he had to do another embolisation a week later to try and save his life. Oliver never really recovered from the embolisations and started having seizures. These were not controlled effeectively and Oliver died on March 20th 2004 at 20.45pm. Our son will live on in our hearts for the rest of our lives . We are devastated by his loss. Our advice to all of you is seek the opinion of the person actually doing the embolisations. They will invariably have more experience in the management of VGM's.
Our love to you all and your little darlings
God bless
Simon and Pamela |
