Born July 18th, 2005
This story is about our baby boy, Kai Da Silva. We were living the perfect life, I had an amazing pregnancy – and our son seemed well. When Kai started nursery at 6 months – he got a nasty virus called Rota-Virus – which involved vomiting and diarrhoea for three weeks – within February 2006 I must have taken him to see the GP around 4-5 times as well as went to the local hospital a few times to get him checked out by paeditricians at St. Helier A&E. On the third visit to the A&E, after noticing a bulging fontanel, a young doctor, Kirsty Schmidt, checked Kai’s head size. In the last few months no professionals had once offered to measure his head, even although it looked larger than normal. Kai was diagnosed on 20th of March having malformed Vein of Galen which was causing obstructive hydrocephalus. Our nightmare was only just beginning.
When Kai was diagnosed, there were no neuro-radiologists in the country who could perform the embolisation – they were all away at a conference in Australia.. We had also heard via Lynn Mussard and Vicki Rainbow, having daughters with the same malformation – that we should push to go to Paris – as Prof. Pierre Lasjuanias was the most experienced person in this particular treatment/field. The website was such an enormous help to us as were Lynn and Vicki, they guided us, advised us and told us what to do and how to get to Paris. We are very thankful to both of them and the website as we would never have found them without it, it was like a shining star for us – which led us to where we were going….
We managed to get funding from the Department of Health for the embolisation in Paris. The wait to get to Paris – was painfully long – it was a month in total – and as the time passed Kai’s head just grew and grew. From measuring 51.1cm from diagnosis – to measuring 53.5cm on day of arrival in Paris – one helluva growth for a babies head for one month. The whole procedure and build up was very hard – but Kai was a star and basically did not show any signs of being unwell in himself before the emobolisation. The surgery was a success although seeing him in intensive care for 3 days nearly broke us to pieces – seeing Kai on life-support to help him breathe when waking up from his deep sleep was gut wrenching . We went home 6 days after we arrived in Paris – hoping that Kai was now on the mend. We were told by Prof. Pierre Lasjuanias that Kai was now cured. This, however, was not to be the case.
We took Kai to get his head measured regularly but after one month I went for the weekly measurement and his head had grown 0.6cm in just over one week. This was not supposed to be happening – we called Great Ormond Street straight away and managed to get an earlier appointment – the following week – still not good enough as his head was growing fast again. By the time we got to the appointment Kai’s head had grown another 0.7cm in less than one week…..They did an MRI scan and told us that the hydrocephalus was worse and that they would need to operate on Kai tomorrow morning. The neurosurgeon, Sylvia Gatscher carried out a Third Ventriculostomy the next morning at 9:30am. The surgeon was happy with the brain surgery but told us that they could not give us the all clear for 6 months to come. Yet again we wait in anticipation for good news of our son’s recovery and eventually and hopefully the all clear.
We are home again now – but now our lives are wraught with worry and fear. Kai is a fighter and I really hope he can keep fighting until they manage to stabilise the hydrocephalus. The third ventriculostomy only carries a 50/50 chance of success owing to the malformation of Kai’s vein of galen. They think his veins and arteries got damaged from the Vein of Galen malformation. We called Paris to tell them about Kai’s Third Ventriculostomy, they commented that this is also very rarely needed after being embolised for Vein of Galen malformation. If this does not work then Kai will need further brain surgery and will have to have a shunt put in – the one thing we never really wanted for him. We live in hope that this may not have to happen.
The support we have received from family and friends has been amazing and we thank God every day for our little miracle. We just wish that soon – this will end – or become easier – the day they tell us our son is getting better is the day we will be able to relax again and not live with this horrible worry hanging over us.
God Bless you Kai, you little fighter, heart as big as an ocean!!