Posted on Leave a comment

Sometimes I wish I was Ignorant.

Sometimes I wish I was ignorant. Sometimes I wish I didn’t know, all I know.

Sometimes I wish I didn’t have a thing called “gut instinct”.

A few months ago, my little baby daughter, Madison, was diagnosed with the same congenital heart defect as her 11 year old sister, Mackensie. Then, only a few weeks ago, Madison was also diagnosed with infantile scoliosis, amongst many other things.

Out of kindness (and probably not knowing what else to say) many people say to me “at least you’ll know what lays ahead.”

But that’s the thing.

I don’t want to know what lays ahead. I don’t want to remember the trauma.

I don’t want to remember the times when Mackensie was being tube fed; the stress when giving her serious medications – which if missed could cause a stroke; having her baptised in hospital; being told by the surgeon that she could potentially die in her heart surgery. After her surgery, watching her in ICU with tubes attached to nearly every part of her tiny body. Little cotton handcuffs to stop her pulling out the very tube helping her to breathe. Bringing her home, terrified that I would do something wrong. Trying to clean her surgical scar without hurting her.

I don’t want to remember my constant questioning of health professionals; the fighting to push her through the waiting list for surgery. I don’t want to remember the gut wrenching guilt I always felt for not being there for my other girls when we were in Crumlin.

Every now and then, of course, these memories would jump into my mind, but I learned how to turn them off.

But now, with Madison, all I can think of is these memories.

I’ve already started doing the things I did then.

Like, worrying. Constantly.

I know she will need heart surgery, I just don’t know when. I know the signs of advanced heart failure. Poor feeding, poor weight gain, wet cough, shallow breathing, sweating while feeding and cyanosis around the lips. Madison has all of these symptoms. But these too can be signs of reflux – which she has too. So I try my best not to jump to the worst scenarios, but it is so, so hard not to. This doesn’t even touch on the topic of scoliosis, which I’m sure everyone in Ireland saw the documentary on last year. All sorts of fears come to mind when I think of that.

I’m scared.

There, I said it. As honest as I can put it. I am absolutely petrified.

This is why I sometimes wish I was ignorant.

Maybe I wouldn’t be so worried. Maybe I would trust health professionals opinions. Maybe I would just “get on with it” – as I have been told to do. Maybe I would be one of those moms who just takes everything in their stride and has faith that it will all be okay.

Maybe, maybe, maybe.

But when I look at the flip side of our situation I also think, if I were ignorant would I have missed the signs? The symptoms that alerted me that something was wrong? If I hadn’t fought the fight, would she still be here today?

What if I doubted my gut instinct? Being a parent is a huge responsibility – keeping another life (and in our house four lives!) simply alive. That’s what scares me the most. What if a doctor doesn’t listen to me – maybe thinks I’m neurotic and then tells me everything is okay – when it’s not.

I’ve been there. Nearly losing Mackensie in the process.

I suppose I’m writing this blog with one simple goal in mind.

I simply want health professionals  to understand that we parents, are not doctors. We often can’t tell the difference between a viral or bacterial infection. We see a skin rash and immediately think the worse. We have a huge responsibility for our little children. We love them so much we would hate to see anything happen to them. We get scared. We panic sometimes. We may seem neurotic.

But isn’t it a good thing that we care for children so much? Or would it be better if we were actually ignorant?

A tiny bit of empathy, kindness and reassurance can go a long way. As can speaking in clear language.

This was shown to me when Madison had a serious adverse reactions to her baby vaccinations a few weeks ago  – landing her in the resuscitation room in A&E.  The consultant came in, saw my tear stained face and wide eyes and she simply paused. She spoke softly and slowly. Explained what was happening – and what could potentially happen. Did not dismiss any small questions I had. Answered the serious questions I had honestly.

She smiled at Madison. Said she was cute. This doctor made me feel safe. It made me feel Madison was safe.

She didn’t have to perform any procedure or give medicine to create this feeling. She simply used her ability to communicate and understand. And that was what I needed right then. I needed somebody to take away the fear.

My four children all have complex conditions and we have a number of doctors who treat us that way on a regular basis, mainly, our GP and our complex care paediatrician in Mayo University Hospital who oversees everything.

They don’t make me feel like I’m neurotic. When I trust the care they give, momentarily I allow myself to feel ignorant – feel that I can hand it over and they will fight for me, fight for my children.

And it is on those days that I am glad that I know all I know, and I never wish that I ever be ignorant again.


Published by Olive O’Connor, CEO MediStori

Thank you so much for visiting the MediStori website.

As a social entrepreneur and mentor to many, I write from my heart and my soul as it helps me learn and grow as a person. I aim to change perceptions in society and I hope it has helped you too in some way. I also aim to help people better manage their healthcare through our family health organiser, MediStori.

To learn more click here

Posted on

Reassurance – Often written, rarely verbalised.

As I came in from another long day at work, my three girls (and three dogs, I might add!) all came running at me – just before I got a chance to glance at the post that had arrived that day.

After seeing their happy faces and hugging them tightly, I felt so reassured that they were so happy, and that yet another day had gone by where I had gone to work and that they were still okay by the time I got home (don’t get me wrong my babysitter is amazing – it’s just a thing I think all moms have a little anxiety about from time to time when they leave their kiddies all day with someone else!)

Anyway, my kids (and dogs!) quickly forgot about me as they knew it was near to bedtime and so they scarpered off to get in their last few minutes of play and television watching. It was then that I took the opportunity to give my attention to the mail, as I had noticed that one envelope had a stamp from my children’s hospital on the front, and I was waiting every day for six long weeks for it to arrive.

However, as soon as I started reading it, my previous feelings of reassurance were soon replaced with feelings of dismay.

The letter started with the usual opening statement outlining how my daughter presented on the day and then went on to discuss her medical history. There were, of course, references to the concerns I had as a parent which were followed by this sentence…

“I have reassured mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.”

So why did I get upset about this? Wasn’t it great to hear she was doing well? 

Well first of all, of course I knew how my daughter was the day of the appointment – I was after all, in the room with her. I didn’t take her out of school nor me out of work to seek reassurance about this. Nor did I go to seek reassurance that she would be followed up on (I had taken this as a given.) 

I had gone there with a specific agenda.

I wanted a proper plan to be put in place for her, for when she wasn’t doing “okay”. With three years of my daughter living with sporadic high blood pressures, a huge fear had settled on me that one day something terrible would happen to her – and all because we had no clue what to do or where to go when this happened to her.

Now please don’t classify me as a neurotic mum yet…please hear me out.

We had been told by specialists that there could be a possibility of my daughter having phaeochromocytoma or carcinoid syndrome, but that sometimes it is only when puberty starts that a true picture would show itself. My daughter also was diagnosed with the same hole in heart that her daddy has [PFO], of which he suffered a stroke from at age 42.

So, for three years our “emergency plan” was to go to A&E every time her blood pressure spiked, to get her urine catecholamines done. This quickly fizzled out because firstly, it wasn’t good for any of us (especially her) to be made more anxious by being in hospital; secondly her blood pressures were spiking all the time and it wasn’t feasible to keep travelling up and down, and lastly, I swore that if I ever heard the term “white coat hypertension” one more time, my own blood pressure was at risk of going through the roof!

So all I wanted out of this appointment was to be reassured that nothing bad was going to happen to her, that I wasn’t “crazy” and that we could have a proper short term and long term plan for her. But by the end of the appointment (and the letter) it was obvious to see that we weren’t going to get this at all.

It also occurred to me upon reading the letter that the other health care professionals that were cc’d into it, could make the possible presumption that I, her mother, was feeling reassured and not, which was the reality, still stressed. With “presumption” in itself a whole other conversation of which I regularly refer to in way of a proverb [in a language I couldn’t possibly share on this blog!] ” I started to think more and more about the safety issues of using this terminology.

In this case, however, I think it could be fair to say that the health care professional reading this letter could have been led into this presumption because it clearly stated how I had felt (even, if it were in someone else’s opinion).

So what does the term “reassurance” actually mean, and when or where should it be used?

reassurance

Interestingly, reassurance is defined as an action of which removes someones doubts or fears, or it is even a statement that does the same.

An action? Really?

By now, I’m sure you can say that it was quite obvious that my doubts and fears were not acted upon. 

So my question is, should correspondence between health care professionals include the term “reassurance” unless the same has been specifically asked of the parent or patient? An excellent blog by Bronwyn Thompson, editor of HealthSkills discusses the benefits of reassurance in patients and she refers to Linton, McCracken & Vlaeyen (2008) who discuss whether reassurance is actually, reassuring. 

Simply put, for someone to reassure someone else, shouldn’t they both be discussing the topic of which caused the fear or doubt in the first instance? And surely a reassuring statement (such as in the letter) can not be given unless it is in fact agreed upon, with the person who had the feelings of anxiety?

Maybe a simple solution to my daughters letter would be to replace the noun “reassured” by the word “told”, for example – 

“I told mother that [my child’s name] was doing very well on the day and that we will give a follow up appointment, as required.” 

Why?

Because if a health care professional perceives a patient to be reassured then there is a possibility that that next appointment will be pushed to the bottom of the pile. The urgency of such a situation may not be deemed as so, because the parent “feels” okay at this time…and the child is doing well.

Now, I do want to make one thing clear.

This issue I have is only around the way in which health professionals may communicate. It does not reflect whatsoever their  ability, skills or professionalism. Believe me, if I don’t like or trust a physician – I move.

Simple as that.

We are very lucky to have the health care professionals we have, although on the same note, quite unlucky that we know them because of the health we do have!

This blog is just a reflection of how communication could be improved upon in relation to medical data. To be honest, if I had my way, I would love to see all parents cc’d into every letter that go between health care professionals as they are, after all, the child’s primary carer. But for now, even if we just change a word or two, it can really help bridge the communication gap that seems to be getting bigger and bigger.

And if that word were only “reassurance”, I feel I myself would be reassured.

Reassurance is a feeling.

I think a patient or parent should always be asked at the end of their appointment do they feel reassured about the initial concerns they had. But I don’t think it is necessary, appropriate or even safe to include such “feelings” in a medical document.

Unless of course it is around the feeling of “concern”.

And that, dear reader, is a whole other topic.