Shunt Donation Project – a big challenge ahead

5 Apr

If you’ve just jumped in and are wondering what this ‘F-List’ I keep banging on about is, you can read about that here.

You can read about how the project written about below is now developing here.

Number Six: Set up a shunt donation programme from the UK to aid countries where treatment is limited or non-existent.
Number six in my list is the most important one to me.  It’s also the reason that my list is rather short, compared to many Bucket Lists and Must-Do-Before-I-Change-My-Mind lists out there.  Number Six is going to be a long project and I don’t expect to have it fully completed and established by the time I’m forty.  I want it to be set-up and running but I expect there to still be some teething problems!  The fact that I intend to have another ‘F-List’ next decade (F for Fifty, natch) is the other reason for my F-List being short-ish; I’m doing my life goals in bursts, head-permitting (a little like the weather).  Back to Number Six – being able to help disadvantaged countries in their treatment of hydrocephalus is a goal that I’ve held since about four years after I was diagnosed.  I wish in a way I had wanted to do this before four years in but I was finding adjusting to life with hydrocephalus pretty hard at that time and was in a bit of a mess to be honest.  The hospital stays were intense and scary and pretty relentless.  But in retrospect I think it’s a good thing that I found it so hard to get through; if it had been a breeze, I probably wouldn’t have felt so compelled to get something done in countries which have limited or no treatment.  Knowing now what rising pressure in the brain feels like, the panic it creates, the horrible symptoms and completely alien feelings, the thought of children going through it with no option of treatment is simply incomprehensible to me.   So around 2005-2006 I started to make notes on what I wanted to do someday when I was well enough to really apply myself to the cause.  There was a lot of reading and research to be done and it would take a long time, I knew – but I never abandoned the idea.
The Go Vap Orphanage
I first came across the Go Vap Orphanage on YouTube; I was looking for videos of anything hydrocephalus-related.  I was having another relentless barrage of problems with the shunt; I was overdraining terribly (see more under the ‘Hydrocephalus’ category for overdraining symptoms and experiences) and was in hospital far more than I was out.

One of the volunteers at Go Vap Orphanage

One of the volunteers at Go Vap Orphanage

  Treatment was slow and cautious due to the complexities of my particular situation and so I was ill for a long time, unable to do much at all apart from lie flat on the floor for most of the day.  As I scrolled through the videos (many of them surgical ones aimed at medical students which wasn’t really what I was after; I wanted to watch people talking about their experiences of having the condition, to see if anyone had severe overdrainage so I could maybe get some advice), I saw an image which stopped me in my tracks.  It was of what looked like a hospital ward, but was obviously not one from this country.  I clicked on the image to watch the short video.  What I saw in that 90 seconds changed my life forever; I knew at that very point that I would not – and could not – ignore the issue and that even if it took years, I would do my utmost to get a shunt donation programme together. Go Vap Orphanage provides food, housing, and education to about 250 children in the outskirts of Ho Chi Minh City.  Many of the children are born disabled as a result of Agent Orange, a toxic defoliant containing dioxin which was sprayed by the U.S. over Vietnam as part of its herbicidal warfare programme called ‘Operation Ranch Hand’. The companies who manufactured Agent Orange, as well as the U.S. government actually knew about the cancers & adverse health effects but did not even warn the soldiers who sprayed the defoliant.  It entered the food chain and subsequently, hundreds of children are still being born today with birth defects and disabilities, hydrocephalus being one of the most prevalent.

Kim Nguyen Browne, founder of the Vietnam Volunteer Network, with one of the beautiful children she helps

Kim Nguyen Browne, founder of the Vietnam Volunteer Network, with one of the beautiful children she helps

Kim Nguyen Browne, the woman in the video, was herself adopted from Go Vap Orphanage and, wanting to give back to the place which had cared for her as a baby, set up the Vietnam Volunteer Network in 2008 to enable volunteers to help the children affected.  Today it is thriving, with regular donations, some support from medical companies and healthcare professionals and volunteers flying in from all over the world.  But it is still a desperate situation as far as hydrocephalus is concerned; the video I had watched had been the ‘terminal ward’ at the orphanage; as the video camera panned around the room, the scene was horribly bleak.  Countless iron cots with dying children.  ‘Too late’; the terrible words which are just unbearable to hear when faced with a picture like that.  Here is a link to the video I mentioned and which I watched; Kim is in it: The Terminal Ward At Go Vap Orphanage.

The first ‘Great Plan’ – which I’ve currently shelved!
My first plan was to see if it would be possible to set up a regular training scheme for UK-based neurosurgical trainees and/or registrars to assist in existing neurosurgery training programmes in countries such as Uganda and Haiti. The benefit of spending so much time in hospital is that you get to chat to all the medical staff at length about their backgrounds.  I quickly discovered after many stays at the National that neurosurgical training placements were difficult to get (I think there are only thirty-four neurosurgical units in the UK).  In developing countries there are often no trained neurosurgical staff to carry out pre-operative and post-operative assessments, initial assessments of potential patients and to assist in theatre.  Of course, the optimum goal is to have neurosurgeons trained in their own countries to add to and develop the existing health infrastructures which already exist.    However, training takes years, funding is short and facilities are in even shorter supply.  So I thought; well, why not try to get a regular rota of UK trainees to work six-month placements overseas before returning to the UK to continue their studies.  Once a group has returned, the next can fly out.  It sounds so simple, doesn’t it?  And if it were that simple, it would have been set up already.  However, I couldn’t find any evidence of established programmes like this; CURE Hydrocephalus in Uganda has medical volunteers flying out but it is on an  basis with no consistency.

Another inspirational individual; Benjamin Warf and some of his patients in Uganda.

Another inspirational individual; Benjamin Warf and some of his patients in Uganda.

I contacted Dr Benjamin Warf, who heads up the neurosurgeon training programme in Uganda and put my ideas to him.  He liked them, said they were good – but that logistically the situation was very difficult.  He suggested I find out first if registrars and trainees would want to do it and if their medical facilities would be prepared to let them go and then return.  I contacted another neurosurgeon, Mr Ellenborgen.  He said the same thing; great ideas, noble ideas; a logistical headache.   So following Mr Warf’s advice, I started lurking on medical student forums, became a member of various chat rooms and read and read and read….and it quickly became obvious that this was a biiiiiiiig job.  Too big to even know where to begin with it.  So many things needed to be addressed; funding, accommodation, training facilities, sufficient patient numbers to warrant the time and expense, willing participants and medical establishments – I literally didn’t know where to go first.  Every time I sat down to ‘have another go’, I’d end up with another banging headache, the way I always do after too much concentration.  I needed to start with smaller, simpler steps.  So the Overseas Training Programme is on hold until I feel stronger to address it again – or until I have a ‘Eureka!’ moment.  IT IS NOT SCRAPPED THOUGH.  I REPEAT, IT IS NOT SCRAPPED.  I don’t like quitting; it’s simply on hold as I have now to get on with the plan I am capable of doing: (Update: as of June 2013 this project idea was scrapped under the advice of the neurosurgeon I am now working with!  All for very good reasons.  The shunt donation project is now what we’re focusing on).

The second ‘Great Plan’ – not so ‘great’ in terms of scale but equally great if it means saving childrens’ lives
The second – more immediately ‘do-able’ plan is for shunt donation.  Shunts are often key to surviving hydrocephalus, yet the cost of buying them and implanting them means that for many infants and children, they are simply not accessible.  Children are left with no options.  In Vietnam, due to costs and difficulties in screening those who may need surgery, usually only the fittest are operated on; the rest are left to die naturally.  Kim had mentioned in her video about donated shunts; feeling that this may be a more realistic goal, I decided to pursue this option and see if I could a) find out just how many shunts are discarded and how many could actually be used and b) get my mitts on ’em.  Operation Shunt is on.

You can read about how this project is now developing here.

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9 Responses to “Shunt Donation Project – a big challenge ahead”

  1. loucyo June 19, 2013 at 3:35 am #

    You’re a beautiful human being. Your dedication will save so many lives and influence numerous people – and I am one of them. Your life story is the paragon of dedication and hope. I wish you the best in your quest and cannot WAIT to see how successful you’re going to be in this quest. I promise you’ll be the first one to know if I ever encounter any hospitals or manufacturers donating shunts!

    P.S. – I had NO IDEA the word “shunt” existed – I learned a new word! Ha, ha.

    • jordantheheadcase June 20, 2013 at 10:04 am #

      Many thanks for your kind comments! I’m just about to put up a long-overdue update and I’m very excited about what’s happened recently so I hope you have a look at that too. And I never knew what a shunt was before I got diagnosed either! Nor what hydrocephalus was! Amazing how things you knew nothing about one minute can be such a major part of your life the next…. 🙂

Trackbacks/Pingbacks

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  7. I’m on the hunt for Hunt | jordantheheadcase - July 10, 2013

    […] of a ‘sorry, we cannot get any perfectly-good-but-recently-expired shunts to you for your shunt donation project because we have guidelines to adhere to’ message I received this morning.  It’s the […]

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