Anger Abound...

Nicola has spent the largest part of her life as an inpatient at the hospital. It has been something that my family has struggled with from the onset.

We moved to Brisbane while I was pregnant with the intention of my husband going back to his former employer, which was a good, family friendly work place... a must given that we were about to have our third child in under as many years.

He lost his job in February this year after having too much time off work to care for our older children while I've been in the hospital with Nicola's repeated admissions...

But trying to make the medical staff understand the impact that this has on our lives has been nigh on impossible, to the point that we've just given up and put all our energy into the fight for her health care, a battle that was constantly being waged anyway.

After we were given her diagnosis, at our first paediatric consultation several weeks later, we had an extended meeting with the new paediatric consultant, as our original consultant was on maternity leave.

This was shortly after I wrote an extremely lengthy email to several high up persons to express my concern and unhappiness at the quality of the care she has received.

When we started this consultation, my husband and I sat down and took our time to explain our concerns... how we felt that our last paediatrician didn't listen to us and that our concerns were never considered, and that Nicola's care had been so far substandard that we didn't consider it to rate on the scale at all... and also the fact that they had REALLY dropped the ball with her diagnosis... that we were so angry and hurt by the way we had been informed of her condition and the fact that we were left on our own with no information, no support and nothing...

Of course, then and there, she said all the right things and made all the right gestures and promises...

Two weeks later she refused to sign the paperwork for us to travel. She told us that the risk of 'contracting seasonal respiratory viruses' was too high so she would not sign our medical clearance.

We dealt with that, we sorted that out... then today we've got a copy of Nicola's medical file to take to the conference with us.

Right in the front is a letter that this 'woman' has written and cc'd to every other department involved in Nicola's care as well as the local GP that *I* see and in it, amongst other anger intensifying comments, she states that we are 'hostile' and that our anger at the botched care our daughter has received is simply a 'severe grief reaction misdirected at medical and nursing staff'.

How the hell can she say that our anger over their screw up's is misdirected grief?

We've been angry since before the diagnosis, this is just the first time we've actually been able to get someone to listen to our concerns!

Gah!

I've sent an email tonight to the director of the hospital asking to have a new paediatric consultant assigned to Nicola's care. I need a doctor that I can trust dealing with my daughter, not a self righteous megalomaniac with a holier than thou superiority complex!

But still... soooooo angry I could cry!

For Better Or Worse...

I received an email recently that quite upset me... it was talking about Costello Syndrome, and what it means to the particular person who wrote the email, who is a mother of a grown Costello person. Her feelings, when reflecting on the question "How does it affect my life" was quite simply that 'it doesn't'.

I read it, and my first response was to feel like I am some how inferior or something because to me it does affect me, it affects my whole family to an unimaginable degree.

To be honest, when we were first given Nicola’s diagnosis, if someone had told me that Costello Syndrome had no impact on day to day life, or that it meant nothing, I probably would have slapped them.

When the diagnosis was given to me, even though I learned the news in a truly horrible way that I honestly hope no one else in the world ever has to deal with, I truly felt like my world had ended. In those first moments, and in the days and even weeks that followed, I felt like something phenomenal had been taken away from me… and I had to grieve for what I had lost before I could realise what I had gained.

I still haven’t embraced her diagnosis, but I have started to accept it… and that in and of it self is the first step in moving forward.

Even though I have started to accept her diagnosis, to be told that it has no impact on day to day life is not something that I wanted to hear then, and it’s not something I like to hear now… because to us, it DOES impact on day to day life.

It impacts on our lives every time I have to feed her via the stupid tube because she can’t feed from a bottle, let alone breastfeed.

It impacts on our lives every time she gets upset and her cardiac conditions cause cyanotic episodes.

It impacts on our lives every time we have to go through yet another appointment or yet another review.

It impacts on our lives every time we have to leave the house… a quick trip to the store is a thing of the past.

It impacts on our lives when I’m waking up to her up to a dozen times a night, (last night was 11) because she has pain from some mysterious source that I can’t comprehend.

It impacted our lives again last week when her routine abdominal scan revealed a ‘mass’ behind her bladder and now we’ve been told to wait a month before we know if maybe this could be a tumour or not because this condition leaves her predisposed to all kinds of nasties.

It impacts on my life every time I see my nephew who is only a couple of months older than Nicola, or any other child her age… and he’s walking and running and talking and interacting with the world… and my daughter can barely hold her head up.

Perhaps the difference is the fact that my child is still just a baby and we are still trapped in the worst of this condition… perhaps the difference is the fact that I am still new to this world, I’m not yet a battle weary veteran… or perhaps the difference is just in my own mind…

So, I guess, after several days of thinking, contemplating and reflecting, this is my long winded way of saying that I disagree.

I have a daughter named Nicola who has Costello Syndrome… and whether I like it or not, it has changed our lives, for better or for worse.