The Brush Off

I have read many adopter blogs detailing difficulties that adoptive parents have had in getting professionals to take their concerns about their children seriously. As a former teacher, I have often thought since becoming a parent about the difficult relationship between the professional, with all their training and experience of many children, and the parent, with their in-depth and intimate knowledge of their own child. It is all too easy for both sides to dismiss the knowledge and insights of the other, and for misunderstandings and conflicts to develop. When this happens, the outcome is rarely likely to be satisfactory for the child.


So far in my parenting and fostering, I've always felt that we've managed to negotiate the tricky waters between professional-land and parent-land quite well. I'm a pretty determined and strong advocate on behalf of the children I care for - it's part of my job - and sometimes this makes me push and even makes me a bit unpopular, but I hope that, in the end, my genuine love for the children and desire to see the very best outcomes for them can be seen, even when I am insisting and demanding and pushing and, yes, sometimes arguing.

Since getting Baby Girl though, I've found myself flummoxed by medical professionals on more than one occasion. On pretty much every occasion actually. It seems that, try as I might, I simply cannot get most of them to take me seriously about pretty much anything.  Is this common to all parents of newborns? If so, I'm sorry for you all!

It goes like this:
Me: She gets a lot of wind. Should I try a different formula?
Health Professional: [Dismissive comment]

Me: She has been very sick. How much sick is normal? I'm worried that she might be lactose intolerant. Is there a way of finding out?
HP: [Dismissive comment]

Me: She sleeps a lot and when she's awake she seems rather jerky. Is that normal?
HP: [Dismissive comment]

Now, admittedly, Baby Girl, is feeding ok and gaining weight, so I'm taking care not to sound overly-dramatic or neurotic about everything, but still, I think I'd feel so much more in control of everything if the many health professionals I've been in contact with would take the time to explain exactly why my concerns are unfounded. Otherwise I tend to think that my concerns are real but nobody cares or believes me.

It came to a head early last week when Baby Girl had what was unmistakably a full-on seizure. I am very grateful that my friend who is a nurse was actually holding her when it started and confirmed what I thought I was seeing, or else, given the events that followed, I would almost certainly have begun to think that I'd imagined it.

I took Baby Girl immediately to our Urgent Care Centre (we don't have A&E in our town any more) where they confirmed that what I described sounded like a seizure and arranged for BG to be admitted to the children's ward of the nearest hospital.

This is where things started to go a bit strange. From the start, the Registrar at the hospital didn't seem keen on the seizure diagnosis. She suggested that it might be reflux. When I pointed out that it was ages since her feed and she hadn't been sick or having wind trouble that day, the Registrar said there was something called 'silent reflux'. I wouldn't even know she had it. It seemed as though every objection I threw up to this diagnosis was met with some medical reason that of course, as a mere layperson I wouldn't know about, why reflux was the right answer and seizure wasn't.

As we stood together, watching BG wriggle about on the bed, the Registrar said, "See, she's throwing her head back now. Babies do that."

Ah right! The penny drops! The doctor thinks I'm an idiot who would confuse wriggling and crying with a massive seizure!

Despite my protestations, the rest of the hospital stay was all about reflux. BG was prescribed Gaviscon in up to six feeds a day and, despite my bringing it up with every member of staff who came my way, nobody ever wanted to talk about the imaginary seizure again.

I understand that when you hear hoofbeats, you assume horse rather than zebra. Normally I'm fine with that. And of course, I would love for this to have been nothing more than reflux. But it wasn't. And, considering BG's medical history, which I can't go into here obviously, I don't think it would have been outrageously over-dramatic to at least investigate the possibility of zebras.

Things came to a head when she was about to be discharged. Revved up by the stress of the week, and having waited five hours to actually leave the hospital, despite being called in and told she was ready, I determined that we weren't leaving until I had managed to have a serious conversation about what was going on.

First I had a weird conversation with a nurse who said she'd been caring for BG. I'd never seen her before, but hey ho. Nurse made me repeat, for about the 10th time, what had happened, and punctuated her every sentence with "Mum" so often that I wanted to scream, "I'm not her Mum! Can't you read the notes?!" Nurse implied that I've not spent enough time at the hospital with Baby Girl. I got shirty - I admit it - nurse got shirty - we were asked to take the conversation into a side room. I waited there for 15 minutes.

Eventually nurse turned up with doctor. I was apologetic. I think I've been patronised and dismissed and insulted but it's no excuse for getting worked up in the corridor of the children's ward! Nurse doesn't follow suit, disappointingly.

Doctor asks me what happened. I explain for the 11th time, adding the postscript that I feel as though nobody at this hospital believes me. Doctor assures me that she does believe me but as BG hasn't done anything untoward whilst in hospital, and it's only one episode, they wouldn't normally investigate under those circumstances.

And do you know what? I'm actually fine with that. Yes, we believe what you're saying that this child had a seizure, but as it appears for now to be a one off, and none of the tests we've done show anything untoward, we're going to release her to your care. If it happens again, come back and we'll pursue it more aggressively.

It wouldn't have been so hard to say that on any of the many occasions before that day when I asked what was going on. So much better than banging on about reflux and waving sachets of Gaviscon around. The phrase, "I do believe you" meant so much that I almost burst into tears when I heard it after three days of getting the runaround.

Baby Girl seems fine now. She seemed fine an hour after it happened actually. I'm doing the Gaviscon because I'm obedient, but that means that now I can't get her wind up - her stomach seems too settled! - so we have squirmy windy evenings each night.  I'll take that up with the Health Visitor at our forthcoming appointment. This wonderful lady has been the HV for two of my previous children, and I know from experience that I won't get the brush off there.

But now, when I look at Baby Girl, I look with different eyes. I see a tiny baby that has had a seizure and could have another at any moment and we don't know why or what it means. I want answers for Baby Girl, but for now, being allowed to ask the questions will be enough.

Comments

  1. It's hard work isn't it - getting them to believe you? I didn't have it with my daughter quite so much - it did take a couple of midwife visits til they believed she wasn't feeding from me, but it was soon sorted out.
    But with Mini, boy have we had it. In our case, the teachers, doctors, social workers and therapists haven't yet seen Mini kick off. And they won't because he doesn't feel safe enough with them to do that. He does it at home, where he is safe. Therein lies the problem of not believing til you see it.
    I understand that they all have their views, they're trained, they're experienced, and some of them *think* they know Mini quite well, but they just don't experience the things that we do.
    If those professionals could admit that, it would be useful and comforting. After all, some days are hard enough without encountering disbelief from those who are supposed to support and help you.

    Thanks for sharing with #WASO, I hope you don't get much more of the disbelief and I'm pleased BG is OK for now x

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  2. Sorry to hear that you've had trouble with the hospital staff taking your concerns seriously. I can imagine how frustrating this can be. Thank goodness BG has you to fight and protect her. Glad BG is feeling better and I pray she has no more seizures.

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