The disconnect in Child and Adult Hydrocephalus care

The disconnect in Child and Adult Hydrocephalus care

Being an adult, diagnosed at the age of 29 with Hydrocephalus, I don’t know what it’s like to receive medical care for this condition from birth.  However, when I read about other’s who have been on the other side of my spectrum, it makes me wonder if there’s a possible disconnect in the care we receive.  First off, I am NOT going to be saying that anyone is more important than the next person as I believe we all are and deserve the best treatment when required.  Children are by far more vulnerable and quick action is paramount in this regard…no disputing that.  However, this is true for anyone living with Hydrocephalus.  Especially, given my post on Vincent Barker, who (in my opinion) was let down by the system and care he received.

So my understanding is that there are paediatric neurosurgeons/specialists and then there are the ones who deal with adult care.  It would appear to me that the approach and care from these doctors are somehow different.  It begs the question “Why?“.

Let me just clarify though, I do believe that there are those medical professionals who make others seem insignificant.  They are the ones who have empathy, skill and knowledge…they are the ones who listen and take you as the patient seriously enough and value what you have to say.  I know this because I have personally had one of these “Angels” care for me.  And, I’ve had the opposite care as well…from too many, so I know I found a diamond in the rough at that time.

Is there a difference in what they have been taught?  Is it a deeper awareness that dealing with children’s illnesses, requires extra care and attention…a deeper sort maybe?  Is it that adult care is just not regarded as important because they are too complex and there are just too many other things that could be going on?  For example, mental health issues like depression, menopause, stress, etc. are among some of the things I’ve been diagnosed with.

I can imagine that the adult brain vs the child’s brain is probably different but it should be the same anatomy, right?  I’m asking all these questions because I found it curious that I’ve read comments from adolescents/adults saying that they received help from or wish they could go back to the children’s hospital where they were treated.

I’m left wondering if there is a disconnect but more than this, I’m left with a concern for the little Hydro warriors who will eventually become adults living with this condition.  Will their care be compromised purely because they now fall outside of the spectrum of being a child?

I wonder what it would take to get all the Neurosurgeons & Neurospecialists on the same page in terms of care of Hydrocephalus even if purely to eradicate the disconnect.

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