Hydrocephalus: An idea is brewing…

There’s something which tugs my heart strings even more than the fact that so many people with Hydrocephalus endure endless brain surgeries. Children, babies to be more specific, the most vulnerable of all who go through this. As a mother, I’d be lying if I said it doesn’t stir something inside of me when I see a baby who has to endure this condition.

But, there’s something even worse and, the reason for this post…children who simply don’t get the medical care they NEED. Children like the baby in this article and video:

Babies like this are more often than not left to die…Unfortunately, it’s the nature of the beast. I think it’s absolutely amazing what the doctors in the article were able to achieve.

The Hydro community certainly needs more just like them…

That brings me to the point of this post. As with every New year, we all (majority of us) end up making resolutions, be it to lose weight, go to the gym, do better, be better, etc…the list is endless. As gentle a reminder as me seeing and reading the article has been, after a fellow Hydro sister posted this link to Facebook, my plan for next year became clear.

You see, a while back, I decided that I needed to do more to help the Hydro community – specifically children/babies left at the mercy of this condition. Having the condition myself and seeing their heads expanding, has me literally feeling their pain. Because of that, I feel a growing need inside to help whoever, where ever and however I can. Many people tell me that my blogs help but (as human nature dictates), I don’t feel like it’s enough.

I’m certainly not in a financial position but there are other ways to help, as I’ve since discovered. And, with the help of some key people, I’m hoping to make a difference in at least one child’s life.

I know of a baby who needed an infection to be cleared before doctors would give him the surgery he needed. The infection was from a bedsore he developed on the side of his head from laying in that position too long. The dressing and ointment he needed was a mere NZ$14! (A ridiculously small amount but one his parents could not afford along with some other challenges outlined below).

As an example, I made contact a few months back with some mothers in the Philippines, asking what some of their needs were. This is a list (not limited to) of what they gave me:

• Diapers.
• Milk.
• Vitamins.
• Strollers – (I can imagine this to be a need as these kids probably don’t go anywhere and spend most of their time laying down. I’m sure it must take a lot of effort for the parents to carry them around as well, given the size of their heads and probably puts strain on their little necks too).
• Carriers.
• Clothes (The challenge with this one is the size of the babies heads, which makes it impossible to put something over so it needs to be taken into account).
• Paying for doctors’ fees.
• Paying for an ambulance – P1000 (Approximately NZ$28).
• Paying for a taxi to get to doctors’ appointments.
• Public care is free but there’s a waiting list and it would appear that they won’t necessarily be bumped up the list just because they need to.
• Pay for stock when the hospital have run out e.g. Needles, Dextrose, Cannula or Syringes.
• Pay for food.
• Limit of 2 shunts only which is free from the Foundation (I think this the Hydrocephalus foundation in the Philippines, who supplies these. However, it’s not promising because shunts fail at any given time, so having a limit of 2 just breaks my heart. Some people go years without needing more surgery, others have had more surgeries than birthdays, they are just so unpredictable.)
• Sometimes they need to buy their own shunts which cost one mother P17 000 (Approximately NZ$469.72). This will however, vary depending on the type of shunt the surgeon decides is best to use, and other factors.
• If they go private, it will cost about P300 000, (Approximately NZ$8289.22) with the Surgeon’s fee alone being about P200 000, (Approximately NZ$5526.15) and then they need to pay for the rest of the hospital costs.
• CT scans, X-ray and other lab tests are free through one of the non-profit foundations. However, their challenges with this would probably be the cost of taxis to get to these appointments.

Doing the currency conversion, had me realise that what is clearly a big amount for these parents, is relatively small in comparison to a stronger currency. One thing, which is very clear to me is, it’s much cheaper to source the items locally for these parents, giving the option to assist more than one family. (The actual cost of certain things does not escape me and as much as it unnerves me, that’s a post for another day). For example, finding a local supplier of shunts in the Philippines may be a step in the right direction. Also, in the instances where parents have to pay for doctors visits, ambulance, taxis, etc.., they don’t because they can’t. This is regardless of whether their child needs urgent care at that stage or not.

Foundations where they currently get help (this is limited and not everyone qualifies for assistance) are:

PhilHealth – www.philhealth.gov.ph

DSWD – https://www.philstar.com/

PCSO – www.pcso.gov.ph

Hydrocephalus Foundation of the Philippines www.thehydrocephalusfoundation.org

When I started approaching people with the idea, I got a lot of “You need to be careful, people will take advantage of you” (some are actually from the Philippines). This may be true, in fact, I expect that as part of the challenge, (But sincerely hope it doesn’t happen). However, if I let this way of thinking stop me from helping a family, then what good is any of it?

I am well aware that the Philippines is not the only place in the world where children/babies are enduring these circumstances, I’d be naive to think that. But…

If we can’t be here to help and support the most vulnerable of all, then what’s the point?

PS. If anyone is interested in helping me achieve this in the new year, please feel free to get in touch.