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Thank you for talking to my daughter

Thank you for talking to my daughter

You wouldn’t think that having someone chat to your daughter would be a big deal would you? I mean, people talk to kids all the time, don’t they?

Not so long ago we had two experiences in the same day that were poles apart. Heidi (non-verbal, non-mobile) wasn’t very well – we know what’s usual for her (chest infections are always a risk, with high heart rate and a spike in temperature), and luckily have open access to the local Children’s Unit. When she appeared to have something other than the norm going on, I rang up to see if we could take her in, but unfortunately, they were full, so suggested we went to A&E instead to be seen.

We were quickly assessed, which was reassuring, but then things seemed to move at a different, slightly alarming pace. Doctors came in, said they needed to take bloods, and I knew then that they would be in for a struggle – Heidi is notoriously bad to get blood from, those sneaky veins just go in to hiding! A different doctor and nurse appeared, and I started to feel concerned. This wasn’t our usual visit, and I was out of my comfort zone.

Heidi was getting more and more distressed, and I could no longer hold back the tears.

I asked them to stop – I had gone in thinking we would take some samples from her trachi and get some antibiotics, and here was Heidi in an absolute mess as a little human pin cushion. The doctor looked completely shocked as I asked him again to stop. I asked him what was going on, and if he could give Heidi a break. He took a step back, and then asked me what her name was. I was stunned; that was when my tears really started.

To be fair to him, he then explained that the first doctor had raised concerns that she was showing symptoms of sepsis, and as they didn’t know Heidi like the paediatric team do, I can understand why they took that approach. What really hit me though, and only as I looked back at the whole event, was that no-one actually spoke to Heidi. I get that A&E isn’t a place for pleasantries or longwinded conversations, but there wasn’t a quick “Hi Heidi, I’m Doctor….” or “ok Heidi, I just need to do x, y and z…”. I was talking to Heidi and trying to reassure her throughout, but it really upset me when I thought how scared she must have been and how I should have been the one to stand up for her. Imagine lying there not being able to say anything, or wriggle out of the way, it would be terrifying for anyone, even more so for a poorly kiddie.

So I made a promise – that I would never sit back again and wonder what was going on, I would never let anyone come in to contact with Heidi without them introducing themselves to her, and I would always ensure that Heidi was fully informed as to any procedures that needed to take place.

I was emotional and tired (like so many other SN mums and dads), but later that day my faith was restored.

We needed to be transferred to another hospital – thankfully nothing as serious as sepsis but they wanted her to be checked out by the gastro team (it turns out that she actually just had a lot of gas….but that’s a whole other comical blog!). We were told that we’d be travelling by ambulance, and to start getting our things together. Like so many others, we can’t travel light, so as I was frantically grabbing catheters, nappies, blankets and all sorts, two lovely chaps appeared and said hello to me and asked who we had here – yay! They then went over to Heidi, told her their names (I’m gutted that I can’t remember, memory like a goldfish!) and explained that we were just going to go on a little trip, and that they would “get her comfy while mum just packs your things”. They then told me not to rush, and gently moved Heidi, telling her what they were doing.

All the way to the ambulance they were chatting and as they set her up to the sats monitor in the back of the van they still told her everything that was going on and why. They asked me if I thought Heidi was comfortable and I’m sure they must have wondered why, yet again, I was crying! I told them that it was emotional, I was tired, and they were just being so lovely.

By the time we got to the next hospital I had managed to stop the waterworks and we were having a bit of a laugh about trivial things. They handed us over to the waiting consultant and said bye to Heidi and that they hoped she was better soon.

These guys got it spot on.

They didn’t stop doing their job, they didn’t slow down any part of the process, but they talked to Heidi the whole time, even though she couldn’t talk back.

If anyone reads this from a healthcare profession, or in fact anyone who comes in to contact with a non-verbal person, please please please just talk to them, like you would anyone else. Yes, it might feel a bit odd if you don’t get a response, but imagine if that person can understand everything of the world around them and you said nothing, they wouldn’t want to be left out, would they?

Thank you to those who have been so lovely – you may never know just how big an impact you have on someone.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sarah Kay

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An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and support others who may be on their own journey.

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