What would you do differently?

'If you could go back in time, what would you do differently?’ I was asked this question during a Danish medical congress in Copenhagen. I was the keynote speaker and had just given my lecture on procedural distress and the use of physical restraint with my special needs daughter. You’ll read my answer in this blog.

After speaking extensively on how many times physical restraint had been used with my daughter Bommel when subjected to medical procedures, how many times pain-relieving medication had been skipped and how traumatized she still is because of all that, I was asked this question: “What would I – as a parent – have done differently?” Interesting.

My answer was and is simple: nothing!
Credit: Andriy Popov, 123RF Stockfoto
I couldn’t have done anything any differently. I had just given birth to our beautiful little girl. Hormones were raging and I was overtaken by emotions. Our world had turned upside down when at just 2,5 weeks Bommel was hospitalized overnight and we learned that our baby was facing lifelong special needs. I was completely out of my depth. I knew nothing about ‘the medical world’, let alone about procedural sedation, analgesia and/or procedural comfort. So no, I could not have done things differently.

The response I gave in Denmark literally was: ‘I don’t think that I could have done anything differently. But I do believe that the healthcare professionals involved with the care for our daughter could have acted differently.’

What could they have done?

1. Use pain relief
From the moment Bommel was hospitalized, pain-relieving medication should have been used. It is such a simple thing to do! I remember that a blood sample was needed on the day she was admitted to hospital. It was for a DNA test. Eventually the pediatrician found a good vein in her tiny head. Drawing blood by puncturing my newborn’s head… I couldn’t cope with that, so I left the room. My husband stayed with our baby. I stood in de hallway sobbing when I heard Bommel wail. No analgesic had been used. Nothing to alleviate her pain. I only recently learned about anesthetic cream. It does exist. None of our doctors ever mentioned it to us in the past six years…

A few days ago I was in a business meeting with several healthcare professionals. We talked about ‘pain memory’ and the fact that when children experience pain at the time of a medical procedure, they memorize this pain and experience even more pain during the next medical procedure. We also spoke about the scientific evidence showing that when this occurs, pain killers are less effective during all the following procedures. It reminded me of Bommel’s admission day, and of the 2,5 months she stayed in hospital. Her heels were pricked every single day. They were covered with puncture marks. And the heel is one of the most sensitive and painful places to draw blood from. This was done without any attempt to avert pain, but with the use of physical restraint…   

2. Prevent the use of physical restraint 
It started on the day my special needs girl was admitted to hospital and she was punctured in her head. Her little flailing arms and legs were held tightly both by my husband and a nurse. It is kind of easy to use restraint when we can label it as ‘for her own safety’. But what if that label is no longer or not applicable? As I wrote in my blog ‘Could you hold your daughter tightly for just a second? - the use of physical restraint in children's hospitals’ from this day forward physical restraint was used every single hospital visit. Bommel is six years old now… The result of all this is that she is severely traumatized and she doesn’t trust anyone she encounters in a medical setting. Even something as simple as measuring her height is a dramatic event nowadays. So, great consideration should be given to how to prevent restraint from taking place, even from the very first moment a child sets foot in a hospital.

3. Let go of (old fashioned) beliefs
I cannot even count the times in the past six years that someone stated: ‘she won’t remember it anyway’! Even nurses from the neonatal intensive care unit told me this. Apparently the belief that babies and (mentally disabled) children forget what they go through in hospital is still prevailing. From my personal experience I know that this is not true. The pain, the fear and the feeling of being unsafe stay with them. Bommel has PTSS because of everything that happened to her. She hasn’t forgotten one single thing.

4. Guide parents & give them a task / role
As I mentioned earlier, I was in the hallway crying. What could I have done differently? I don’t know. But I do know what I needed at that time. It would have been helpful if someone had accompanied me into that hallway. That some of our own healthcare professionals would have asked me how I was coping as a special needs parent. I would have welcomed someone giving me advice (do’s and don’ts) on how to be there for my daughter during a medical procedure, test, scan or examination. Tips that go beyond comforting and cuddling her when the procedure is done, because that’s what I have always done and still do, of course. I can’t count the times that I have felt powerless while Bommel was being restrained by up to seven doctors and nurses and was crying helplessly. Often, I just stood there feeling awful. And that’s a terrible thing. I was not assigned a clear task or role, except being regularly asked to be one of the people restraining my daughter. I must admit that, to this day, even though it can look like I am very experienced, I still haven’t figured out how to best deal with these situations and how I can actually be there for Bommel during a medical procedure, test or exam.

Looking back, I don’t think I could have done anything any different six years ago. I strongly believe that this responsibility does not lie with (unexperienced) parents. It is the responsibility of the healthcare professionals. They are familiar with ‘the medical world’ and with them lies the task of guiding children and parents well. This goes for all children who visit the hospital or receive medical care at home. Whether they’re still a baby, or if they need medical care only once or whether they have special needs, or not. It doesn’t matter. All children deserve to receive medical treatment without restraint, without pain, and without fear. They should not have to lose trust in the healthcare system and in the doctors and nurses treating them!

So, now I would like to turn the question around: 
Dear healthcare professional, what are you going to do differently from now on?  

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