This website was begun because we discovered my son had severe Hydrocephalus (known as Ventriculomegaly prior to birth) a few weeks before he was born. At the time, like most parents, we felt a bit lost, overwhelmed and unsure. We’re now 16 months down the line, have learnt a huge amount and want to share this with other parents and people who have Hydrocephalus. This website isn’t intended just for parents, but for anybody who has the condition.
Initially it was begun because we want to go on holidays near Neurosurgical Hospitals in case of an emergency. I discovered there was no resource showing those hospitals around the world, so I began to make one.
If there is interest in other areas, then they will develop based on your feedback.
All of these resources are being built with support of the Hydrocephalus community, if you have anything you can share then please press the Contact button and let me know.
Please do your own research on each of the resources below.
Currently, the hospitals are simply hospitals around the world that we have been made aware have a neurosurgical facility. Ultimately I want to build a comprehensive list of these hospitals, and eventually add some form of quality guidance.
Please be aware that not all of the hospitals will do both paediatric and adult neurosurgery.
If you are travelling to a country, make sure before you go that the hospital still has a neurosurgical department, and what type of operations they have the facilities to do.
All the best,
Michael
WEBSITES
Harry’s Hat – https://harrys-hat.org/
The only UK charity to focus solely on Hydrocephalus and its impact. Our overall aim is to make life better for children with Hydrocephalus, as well as for those who love and care for them; and, ultimately find a cure.
Shine Charity – https://www.shinecharity.org.uk/
Europe’s largest organisation dedicated to supporting individuals and families, as they face the challenges arising from spina bifida and hydrocephalus.
Hydrocephalus Association – http://www.hydroassoc.org/
The mission of the Hydrocephalus Association is to promote a cure for … to the lack of treatment options for the one million Americans living with hydrocephalus.
International Federation for Spina Bifida and Hydrocephalus – https://www.ifglobal.org/en/
The mission of IF is to improve the quality of life of people with Spina Bifida and Hydrocephalus throughout the world, and to decrease the prevalence of Spina Bifida and Hydrocephalus, by primary prevention.
Headway (The Brain Injury Association) – https://www.headway.org.uk/
Headway is the UK-wide charity that works to improve life after brain injury. Through its network of more than 125 groups and branches across the UK, it provides support, services and information to brain injury survivors, their families and carers, as well as to professionals in the health and legal fields.
Mencap – https://www.mencap.org.uk/
Mencap is the leading voice of learning disability. Everything we do is about valuing and supporting people with a learning disability, and their families and carers.
Cerebra – http://www.cerebra.org.uk/
Our Mission is to listen to families that include children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together. Core services include:
- The Cerebra Sleep Service
- The Cerebra Legal Entitlements & Problem Solving Service
- The Cerebra Health and Well-being Service
- The Cerebra Money Matters Service
- The Cerebra Innovation Centre
Teach Me Anatomy – http://teachmeanatomy.info/neuro/vessels/ventricles/
An anatomy website which explains the function of the ventricles in the brain, the Cerebrospinal Fluid (CSF) and how it works.
Enable Law – https://www.enablelaw.com
If you believe a hospital may have been responsible for the cause of your condition, you may want to discuss this with a medical negligence lawyer. Katherine has a child with hydrocephalus and cerebral palsy, you can read her story here.
FACEBOOK GROUPS
Shine East Anglia – https://www.facebook.com/groups/1656449857947469/
UK Hydrocephalus Support Network – https://www.facebook.com/groups/198517083574246/
Hydrocephalus Association (U.S.) – https://www.facebook.com/HydroAssoc
Hydrocephalus – https://www.facebook.com/groups/37444694626/
Ventriculomegaly – https://www.facebook.com/groups/621805394518804
HOSPITALS
Please contact us if you know of any other neurosurgical hospitals we can add to this list. Please zoom out of the map to see hospitals we have listed worldwide.