Vietnam Archives – Jordantheheadcase

Okay…total U-turn….

May 19, 2014

Erm….so you know how I said in my last post that Vietnam work was going to have to be shelved for a bit due to the key contacts I was working with disappearing? Yes, well, forget all that. I had a final push at trying to get the Vietnam door open and….ta-daaaaah! Doors flinging open all over the place. But most importantly, these doors were being opened by the right people. So in the past couple of weeks I’ve possibly made more progress than I had done in the last six months.
Looking back, it almost makes me laugh. Because really, the key to achieving your goals is so simple. You need passion about what you are doing. You need to be doing it for the right reasons. You need to be able to dream big. And the people you decide to work with on the way need to be just as passionate, just as motivated for the right reasons and must be dreaming just as big. As the new neurosurgeon I was put in touch with (Martin Corbally) who opened a whacking majorly big door said to me regarding my project, ‘Jordan, doors are just waiting to open’. And now they have, it feels great. I won’t go into all of it because there’s shedloads of work ahead but I will say that it feels very positive, very exciting and very possible. But I will mention Hillary Browne of Helping Orphans Worldwide…the biggest heart I’ve encountered in a long time and a big door-opener as well. She does amazing work with her foundation (check out the link before) and is soon to be moving to Vietnam permanently so it’ll be fantastic to have so involved a contact actually out there, seeing as I can’t get on a plane due to my flipping noggin’. So all good and now all moving forwards once again! Stay tooned for news on this one.
I also had a very productive and lovely meeting with a major hospital in a major city, who are being majorly helpful. I very frustratingly can’t name them because they, like many who want to help in the donation of expired-but-absolutely-perfect medical equipment, are bound by internal rules which prohibit them donating; as a result, it’s all sent to landfill or for scrap metal. MADDENING! So they’re doing it very secretly. I panic slightly about this on a weekly basis but their determination to join this cause overrides their fear of a possible firing and they’ve said they are more than happy to risk it. Such determination of spirit is what fuels my belief that this will work. Indeed, they’ve donated lots already to me (I sent out a goodie-bag of neurosurgical bits to Ethiopia last month from them) and now they’ve come up with major full kits for neurosurgery and shunt insertion which are literally like gold-dust. They’ll be ready for me in July. Very ‘cited about that!
So many people have been offering donations for this recently…it’s so kind. They range from money to fax machines to offers of help carrying all the heavier stuff to London so I can pass them onto the volunteers taking the equipment out to whatever country it is (that offer is probably the one that got the most effusive thanks!). I’m in the process of setting up a charitable foundation with a website in production so that if folk do want to get involved in any way, it’ll make it a lot easier for them to do so. So far I’ve not accepted money from anyone as I didn’t want anybody but myself to be out of pocket in any way. But now the project is getting bigger and spreading its wings, I can see that if I carry on this way, I’ll end up bankrupt! Posting heavy equipment across the world is not cheap, nor are the UK rail fares to go and pick it up (I’m not able to drive for two years following excessive burr-holes-in-da-head). The hardest thing is choosing a name for the charity. What the bejeezus am I going to call it? It could be something safe and descriptive but I personally want it to be catchy, something which will get attention. Not just another ‘Society For…’ or ‘Association For…’ because the charity world is saturated with those (no offence to Societies and Associations; it’s just that I don’t want us to get lost). So late-night brainstorming sessions looking for a name are the current order of my day.

My, what a helpful post that was! I have great news on the development of the project but I can’t tell you what it is, I’ve received some amazing donations but I can’t tell you who they’re from and I’m soon to be a charitable organisation but I can’t tell you what it will be called. Aren’t you glad you read this?

Before I go, here’s a picture of true happiness….apparently all that’s needed to achieve this state is a warm lap, some sunshine and someone tickling the top of your head. Who knew?

This is da life.

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I am not a patient patient.

January 21, 2014

At last! At long flipping last! I actually feel a little better in the head department. When I left hospital in October last year following my month with a bolt in my head, I didn’t feel much better than when I went in and certainly not as improved as I usually do following surgeries. It has been a challenge sometimes to believe that I would get better but sometimes you have to believe in the positive. Even if you have to force yourself to. Anyway, yesterday I managed to go for a run…the first run in six months. Oh, how I’ve missed it. It hurts my head when I run; the pressure can go a bit mad and my face tends to turn a worrying shade of purple, like a grape. It’s not attractive. But afterwards I always feel fantastic; I sleep better, my headaches are generally easier and I can eat cake without having to worry too much about it as my metabolism is so much faster. My surgeons know I run daily most of the time and have never told me to stop. So yesterday I felt very jubilant because before that there was no WAY I could have run; I was having difficulty even standing up from a sitting position. I had a pressure reduction in my shunt six days ago and I can feel the improvement slowly but steadily going on. Until this week, my bed was raised on two bricks at the head-end (I couldn’t tolerate lying flat) and every time I’d go to stand up the pressure would go too high for me to tolerate. So I told Saint Simon, who ordered me to come up the next day and he changed it for me. And now my bed is only on one brick and I can stand up a lot more easily. I think I’ll need one more pressure reduction in the next couple of months and hopefully that will be it. But oh, the relief of starting to feel better after almost a year of feeling constantly exhausted, headachey, pressured and sick. I’ve even taken on an extra work shift. Get me.
And now it’s shunt project time! Kim Nguyen Browne from Go Vap Orphanage has a much-needed brain scan for me of one of the orphans there who was born with half a brain and who was successfully shunted. Usually the children born with these sorts of complications are left with no treatment at all. Kim has unfortunately been very ill so instead of being in Vietnam right now as originally planned, getting the much-needed figures from the government, she’s staying here to recover. Poor thing; she’s missed the children she usually sees over there so much but her health comes first. Health always comes first! Given the change of circumstances Kim has asked if I can deal with the government in Vietnam. Me. Little old me. Oh, God. I’m meeting with her soon to collect the scan and to get a crash course in liaising with the Vietnamese government. She thinks my dealing with them will speed things along as she’s still too ill to do all this – which makes sense. But I feel the same way now that I did when I initially started this project; that I’m way out of my depth and have no idea of what I’m actually doing! Of course she’ll help me and will be there for support. And obviously I have Lewis on board now too so I’m not doing this alone. But it still scares the crap out of me. I can barely understand the motivations behind our own coalition government most of the time but at least they have a healthcare system which actually treats sick and disabled children (as long as they don’t dismantle it in the next few years). Trying to bring about change in a health ministry which has run the same way for years and doesn’t seem to have the motivation to treat sick and disabled children feels like it’s going to be a challenge to say the least. But then I knew my present recovery was going to be slow and drawn-out – and I was right. But I’m getting there and things are slowly improving. Pigeon steps forwards. But steps forwards nonetheless. I think we can apply that to foreign health ministries, right?

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Er, Excuse Me….But Where Did The Year Just Go?

December 5, 2013

Sorry I haven’t updated for yonks, but I had forgotten during my nearly-two-year-surgery-break how long a recovery takes! Because I didn’t end up having a massive surgery I thought I’d bounce back quickly but the very unexpected deterioration after having the ICP bolt removed obviously made its impact known.

‘Helping’ by sleeping on the decorations.

I can’t believe it’s December; the year seems to have had a ‘blink-and-you’ll-miss-it’ effect. I’ve had two more trips back to hospital since I left; the first for another pressure adjustment (downwards) and the second one just a check-up to discuss things. The plan is to leave me alone over Christmas and the New Year (hurrah!) and try another adjustment in January. I’m currently on setting eleven; my surgeon thinks I’ll end up somewhere around setting eight. Funnily enough, when I was on setting eight before, between the end of 2009 to 2010, it was the best I had been. That was before two shunt infections decided to have a bit of a party inside me and to royally screw everything up. But that setting eight period – it was indeed good. So fingers crossed I’ll get back to that place but it’s going to take about six months to a year apparently. You can look at that one of two ways; six months to a year of feeling ill, tired, nauseous and frustrated. Or six months to a year before I’m back to my best-ever physical state. Can you guess which viewpoint I’m going to adopt?
I had another meeting with Lewis Thorne last week too; I like his working style – he was wearing jeans with very funky Argyle socks pulled over the top and no shoes. A man after my own heart; comfort equals a productive work day. When I’m working from home (which accounts for ninety per cent of the time), I wear slippers and lounge wear.

See? I wasn’t kidding.

Stylish of course – I can’t work if I look and feel like a slob (which is never, just for the record!). But the second I come in from a meeting, I strip off my smarter work clothes and get comfy. It’s a bit like a cluttered home reflecting the state of your mind. I’m a bit of a minimalist as I cannot stand clutter. I have enough furniture in my home with ‘touches’ to feel homey and cosey. But that’s it! Anyway. Back to Lewis and his socks. We had a good chat about everything and went over the more problematic areas of the shunt donation scheme. Lewis is brilliant at making things seem do-able. I asked him if he thought I was worrying unnecessarily about one particular issue and he said yes. I kind of knew that all along but it’s good to have clarification! We each have our ‘homework’ list of things to get on with and will meet again in January. And I think this time I’ll take my slippers with me. We did have a moment regarding the proposal for the Vietnamse government where we looked at each other with realisation of just how big a task this was going to be. We may be passionate about this but we are also realistic! Just getting hold of the information we need in order to put together the figures for a water-tight proposal to really persuade the health ministry to invest in the treatment of these babies and children is not going to be easy. And of course there is no guarantee that it will work. But nothing ventured, nothing gained. I shall update more when more has happened because at the moment it’s just lots of phone calls, emails, figures and reports which is on the face of it pretty boring!
So it’s December, it’s nearly Christmas, my decorations are nearly done (bought the wrong-size tree lights so need to get the right ones today) and I’m loving the Winter weather, cosy evenings and candles. I’ve decided to do the Photo-A-Day Challenge for December; my friend Jolene does it often and I always think ‘I really must do that sometime’.

Day 1: Red.

Then I go to the fridge and see Mr Samandouras’s quote (written on a Post-It) stuck on my fridge; ‘you know how they say “good things happen to those who wait”? Rubbish! Nothing happens to those who wait! Good things happen only to those who take action.’ Having a chronic condition can make one more prone to procrastination – well, it is hard sometimes to get all motivated when you actually feel like throwing up – but it’s just a case of frequently referring to quotes like that to keep your mind on the ball. The photo challenge is detailed here ; you simply take a photo a day based around the one-word description set for that date. Sometimes you have things to hand so it’s quite easy. Sometimes you need to use your imagination a little more. So I started it on December 1st.

Day Two: Where I Stood.

And I’m just finding out how difficult it is to take a photo a day when you have a Burmese cat around who a) always wants to be in shot and b) always wants to be in shot. What I have also found out is that doing it really makes you view the world in a different light. You start to look at your surroundings and try to figure out if they’d work as a photographic composition.

Day Three: Silver.

As you can see, Hoshi insisted on being in shot on the second day. She doesn’t like candle flames so the first day was easy. I’d already removed her three times from that bannister as she was ruining the angles and lines I liked in that shot; in the end I gave up and just let her sit there and scowl at me. I’m yet to upload yesterday’s and today I don’t know what to do; the title is ‘In The Cupboard’; all I have in my cupboard are tins, teabags and a loaf of bread! Thinking cap on. I’m very tempted to let Hoshi have her way with this one and just let her get in the cupboard. But that would be too easy. Shame I don’t have access to a fake plastic skeleton…….

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And People Still Really Need Convincing About This?

September 12, 2013

THIS POST CONTAINS IMAGES OF UNTREATED HYDROCEPHALUS CASES IN CHILDREN WHICH YOU MAY FIND A BIT UPSETTING SO IT’S UP TO YOU IF YOU READ IT; JUST WANTED TO WARN YOU FIRST!

If you’ve read this blog before, you’ll know that I have hydrocephalus and that I have a shunt which basically, keeps me alive. You’ll also know that during my surgery-free eighteen months I’ve been working on a project to get shunts sent to countries which are lacking in treatment for hydrocephalus, which is a massive problem and a particularly cruel one as it affects mainly babies and children only; simply because if left untreated, they die before adulthood. I am currently awaiting surgery next week for my own shunt which is malfunctioning so have been unable to work on this for over a month now but I hope to be back on it soon. What has become very apparent to me since I started work on this is the restrictions we have placed on ourselves to prevent helping other countries, which is totally ironic seeing as the government seems to pride themselves on providing foreign aid. Chucking money at a problem doesn’t always solve it, however and in the case of hydrocephalus treatment, there seems to be a real lack of not only money invested in it but actual motivation to do anything about it. I think it scares health ministries because it’s ‘specialist’; it’s the brain, so it’s scary. There is a fear in some cultures of such a condition; it’s associated with demons and the child is often abandoned as a result of pure fear on the part of its family. There are not many neurosurgeons in affected areas – sometimes none at all – and the shunts needed can be very expensive for poor families and poverty-stricken countries.

Go Vap Orphanage looks after hundreds of children like this – shunts need to be donated due to high costs.

Here is where the UK and any other country in the world which has a good hydrocephalus treatment system in place could help. But I’ve experienced now first-hand the frustrations of not only hospitals and the surgeons in them which want to donate their unused stock to me, but even the shunt manufacturers themselves, due to what are (in my opinion at least) overly-rigorous checks, guidelines to adhere to and restrictions regarding the donation of expired medical products. I appreciate that we need to be careful. I would never want to send out equipment which is faulty, which is damaged or which is dangerous in any way and neither would the neurosurgeon who is helping me on this project. Of course checks need to be made, audits may need to be performed and in some cases, shunts will not be suitable. But the real problem lies with the guidelines issued by the NHS and the World Health Organization (WHO). For instance, point 7 of the WHO Guidelines For Healthcare Equipment Donations reads as follows: ‘There should be no double standard in quality. If the quality of an item is unacceptable in the donor country, it is also unacceptable as a donation‘. Expiry dates mean everything. Once a product is expired in the UK, it cannot be used, in adherence with NHS guidelines. The product may be perfect. It may be useable. There may be absolutely nothing wrong with it. But try sending that product over to the Congo where there is a dying child desperately in need of a shunt, any shunt, and it’ll be stopped at customs. Because we wouldn’t use it in the UK. The fact that we have thousands of brand new, state-of-the-art, shiny shunts available on tap, for free, for anyone who needs one here courtesy of the NHS isn’t taken into consideration in the WHO guidelines. The countries who need these perfect shunts don’t have another option. There is no choice, other than certain, slow, agonising death for the child concerned.
Recently The Sun newspaper covered the story of little Roona Begum from India, who had advanced hydrocephalus; you may have read about it. Two students set up a public campaign to get funding for her surgery, which was performed earlier this year, after pictures of her were circulated widely on the public media.

Roona Begum – a shunt was found for her and surgery was performed.

What I found interesting was reading the many hundreds of comments left by readers under the articles about Roona. It was clear that many of them didn’t even know this condition existed and were up in arms that nothing had been, up until now, done for her. It was fantastic that she was able to have the surgery and is – so far – doing well although many thousands still need to be raised for further surgeries; it was never going to be a quick recovery process with hydrocephalus that far advanced. But the whole story leaves a bad taste in my mouth. Not that Boona got treated – thank God for her and her family that she did – but that she is just one child. One child out of thousands and thousands who was lucky enough to have the spotlight shone on her and as a result get help. This has been going on for years. There are lots more looking exactly as she did. Right now, across the world there are children lying in huts, unable to move, hideous sores on the backs of their heads because of it, in pain with no access to medication to ease it, slowly dying. Just because the media hasn’t covered all their cases doesn’t mean it’s not going on, every day, right this second.

Governments need convincing, guidelines need changing

Once my surgery (surgeries?) is/are over, I shall be cracking on with the proposal for the Vietnamese government which I am working on with Lewis Thorne and Kim Nguyen Browne. Kim is working with the Government side and Lewis and I are putting the proposal together; we are aiming to prove once and for all that both economically and ethically it is absolutely not beneficial to continue to leave these children untreated. The cost of everyday nursing, clothing, food, medications (if there are any) and accommodation for terminal children until they pass away is huge compared to the comparatively minimal cost of a shunt surgery. And if many of the shunts can be donated, recently expired products from the UK, the US, Canada and Europe which have been passed as safe to use, the cost to these governments receiving them will be even less. If this proposal succeeds, we intend to roll it out to other health ministries and governments in developing countries. But the WHO and the NHS may need to be flexible and introduce a bit of wiggle-room regarding their restrictions on expiry dates. At the end of the day, as long as the products have passed some essential checks to ensure their safety and useability, they should be available for donation. They should not get stopped at customs. Codman UK should NOT be questioned on their ethics for wanting to donate expired shunts; this is what is happening there right now, hence the delay in getting the Bactiseal shunts to Kenya – and these are shunt manufacturers who are being challenged!! The only ethics that should be questioned are those of the people wanting to place a block on donation and instead send all the good shunts to UK landfill, thus ensuring that hundreds of children across the world will not get the treatment they deserve.
It’s all very well for people-in-suits to sit at their desks here, in their plush offices, after a nice lunch, and make such decisions. If they were out there, if it was their child, if they had no other option, if there was an offer of help in the form of a donated shunt, they’d take it. You can bet your life they’d take it. This picture features at the beginning and end of this post was kindly offered to me by a very talented photographer, Daniel Cima. You can see more of his amazing work at www.danielcima.com. This image sums up the horror and the pain – both physical and mental – of the children and their families caught up in the nightmare of untreated hydrocephalus. I couldn’t tear myself away from it when I first laid eyes on it. As I sit here and look at this image, my own shunt is failing and therefore I’m looking at it with some real understanding of the pain that child is feeling. Lying down is agony. But I have the reassurance that in a weeks time I will be in hospital and in a couple of weeks I’ll most likely have a new shunt. I have hope. I have a light at the end of the pain tunnel. And God do I feel guilty when I look at that photo. I want to run over there, hand them a shunt and escort them to a surgeon. We have hundreds of shunts here which will not be used. They’ll be thrown away. Please, WHO and NHS, have some sense when we approach you later this year. Sometimes guidelines are helpful and sometimes they spill over into over-cautious and restrictive. Please identify where you need to relax the reins and realise that just because a shunt would not be used here, doesn’t mean that it can not be used elsewhere. If the picture below cannot convince them that things need to change then I don’t know what else we can do.

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Shunt Donation Project – a big challenge ahead

April 5, 2013

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

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, 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.

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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