Our journey with hydrocephalus began when Holly was 32 weeks pregnant and a chance scan discovered that Max had severe hydrocephalus, or ventriculomegaly as it’s called before a baby is born.
What followed was a lot of unpleasant conversations about possibilities, scans, neurosurgeons, clinic appointments and conversations that I wouldn’t wish on anybody.
We all have different ways of coping, my way is to learn as much as possible. Which is exactly what I did.
But I found it surprisingly difficult.
There were a few forums I found, which were the most useful, but the problem was we didn’t really know what we were looking for, or the right questions to put into Google to find the information we were looking for.
Now Max is 10 months old (he was born 8th November 2016) he’s had two shunts, one shunt infection and one shunt displacement. We’ve learnt a huge amount from his neurosurgical teams, his nurses, and we’ve found some of the places that have amazing people who’ve been there before and will share their experiences.
This website was begun for this Resources page.
I like to travel, but we found there was nowhere which listed neurosurgical hospitals around the world, and without these we don’t know where we can take Max. The resources page was built to start listing neurosurgical hospitals around the world. It’s being put together with help from anybody who knows of them. Initially we’re just listing the hospitals, but ultimately we’d like to put their specialities, whether they do paedatric surgery, as well as peoples reviews and experiences of them.
The resources page will also contain websites we’ve found very useful and links to Facebook groups. It’s only just begun and it’s something that will be frequently updated as people share more places with us.
My aim is to make this site appear on the first page of Google when somebody searches for hydrocephalus or ventriculomegaly, so they have a starting point with where to get more information and support.
Not knowing what to do with the rest of the website, I have made it into a question and answer site. I have no idea whether this is something our community needs. Whether it is or isn’t, I will take the lead from you and develop it in the way we all feel is needed.
Please use it, please let us know if it’s helpful, if you have any experiences, knowledge of hospitals, links to websites, Facebook groups, charities or anything else you have found useful, then please share them with us so we can share them with everyone else.
Michael, Holly and Max (and BeeBee) Wilding