Hydrocephalus : Advice for parents of children with this condition 

Hydrocephalus : Advice for parents of children with this condition 

Parents, You are the example your child will live by in time to come.

I know for a fact that I don’t need to be telling you just how scary it is not knowing if something is wrong. You’ve been there/are there and know exactly how torturous it is.  However, your child will see how you advocate on their behalf, they will grow up and there will come a time when they can speak for themselves.

This is my advice to you.

Firstly:

THE most important thing you can do for them is to document their journey, keep all medical records and if you don’t have them, get into the habit of asking for copies whenever they have any diagnostic tests done. You might be in a situation where the doctor you are seeing is OK but you don’t always agree with them. You have the right to seek a 2nd, 3rd or 10th opinion if you are not happy with the care you’re receiving. These are the most important sources of information because when you leave one doctor in search of someone else to help you, you need what they have. Medical history and notes that, once left behind, could be a bit challenging to get back.

I say this because I left South Africa without thinking that a simple thing such as the results from my last lumbar puncture would be beneficial. I also didn’t think to get any medical notes the surgeon had on me while I was in hospital for just over two weeks with my last operation(s). It took some phone calls a couple of years later, with time zone differences, finding out the surgeon no longer practices and what feels like a dead end street to get the few pages from the hospital ward file. I was lucky in that regard to get something but it’s useful only to me in terms of piecing together what happened, since I can’t remember much of it (being comatose half of the time). I still don’t know what the pressure was and can therefore only go on what I have now. Also, I consulted with a new doctor a few years later and actually had him say “I don’t believe you ever had Hydrocephalus“.  He gave me the impression that a doctor from a “Third world country” probably doesn’t know what they’re talking about. (This is a sore point for me). At least if I had the documented proof, I’d be better off.  However, his opinion was blown out the water by the very next surgeon I saw, who in fact confirmed signs of Hydrocephalus on my initial scans at the time of my diagnosis.

Secondly:

Your child will grow up and need to advocate/speak for themselves, as I’ve said before. They will need the example of resilience and perseverance that you will have displayed throughout their lifetime. They will use that as a springboard to push themselves forward into being heard. More importantly to this though, they need to understand their condition…you do too. It’s weird but I’m going to say this…You/your child will know this condition better than the medical professionals with their university degrees. I’m not disregarding the fact that they are the subject matter experts in their field of study. But, what I am saying is that the person living with Hydrocephalus has front row seats to what’s going on inside of them. They know how they feel and it might not always be textbook perfect but it will be unique to their body.  The nature of this condition is that you cannot ignore what you are feeling. There’s a lot of second guessing and it can sometimes become confusing but if there’s one thing I know for sure, when we feel something is not right…most times it’s not.

So…fight for them while they can’t and when they can, give them the tools necessary to fight for themselves. Knowledge about Hydrocephalus is your best ally so become the subject matter expert in your own individual instance first. Use others experiences and listen to your gut (super important). I’ve said before, you are doing an awesome job in raising your Hydro warrior…and, I meant every word.

Never allow yourself, or medical professionals for that matter, to fool you into thinking that the ETV or shunt they treated your loved one with…is a cure. There is none… not yet anyway. Be vigilant, be demanding and whatever you do, don’t give up or stand down. Be their voice and teach them to use their own when the time comes.

 

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Thank you for taking the time to read.

I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

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