It was one of those things I’d never really considered before Dominic was born, I mean, you see it all the time on hospital dramas – the family being presented with a piece of paper to consent to some crazy surgery that will either kill the patient or save their lives… The way the doctors almost seem to bully them into signing, attempting to ‘understand’ the internal conflict of the person holding the pen, but really (along with the audience) not being able to understand at all why you wouldn’t sign.
I was always a big fan of ‘House M.D.’ with Hugh Laurie – in fact, almost morbidly, I pretty much watched the entire series while Dominic was in NICU. I did, however, skip any ones with children and pregnant women. I’m pretty sure that there is some deep psychological significance to this, but for now we’ll skip it. I watched it because it helped me with medical language, reminded me about basic biology and more importantly, it made me laugh.
The bits I remember now though are the moments they presented the families with those bits of paper, and how much the reality of that situation differs from what was dramatised.
It was my James (husband / dad) who signed the first 4? consent forms. Number 1 – because I was still in my local hospital who refused to let me leave because of my high blood pressure. (I ask you, if you’d just given birth and someone had ‘stolen’ your poorly baby and moved him over an hour away, what would your blood pressure be doing?) and the others because they were all Day 1, 2 and 3 and I was still traumatised, poorly and admitted to hospital. I had no idea what was going on. However after that, we shared that responsibility of wielding the pen.
What I have learned, is that signing that consent form is easy if the outcome of not signing it is certain and imminent death. When all other options are exhausted and physically Dominic could not survive another day without intervention, there isn’t really a decision to make. But then there’s those other kind of decisions: the one where he might not survive the surgery but he would survive a week, a month, a year without it and the one where he might not survive the surgery but the surgeons ‘just want to have a look’ (my personal favourite).
Asking for your permission to slice and dice your newborn baby follows a very specific format:
- The nurse looking after your baby explains what was discussed on the doctors rounds and that the surgical team will be over to explain ‘later’ what they would like to do
- Two ‘junior’ surgeons attend to observe your baby and explain briefly what the procedure entails – they are usually present at the surgery, but they are not the ones holding the knife
- After you have had a few hours to think about what you have been told, the consultant surgeon attends with the consent form – this is the person, or one of them, that will be performing the surgery
- The surgeon will explain the procedure in detail, drawing pictures where it is helpful. As this is the second time you have heard what is going to happen – it all seems to make a bit more sense this time
- The surgeon will then go through all of the risks. They have to tell you EVERY risk. They have to make sure you understand ALL of the risks. In short, this is the bit where they scare the living daylights out of you and ensure that you understand that by signing this piece of paper you are agreeing to risk your baby’s life. Your baby could die.
- Then they tell you the odds of death, the considerable skill of the surgical team and their personal feelings about your baby’s chances in an effort to reassure you.
- They write everything down on the form, ask you a couple of perfunctory questions about whether you mind them recording the op, mind medical students being present, whether or not they can collect samples if necessary and pass it across to you
- ‘Do you have any questions?’
- You sign the form
- They hand you back the white copy and tell you the porters will come collect your baby at X O’clock and that he/she will be starved for 4 hours prior
- They smile and leave you feeling like you’ve made the right decision
For me, it was about 4 hours later I started to doubt everything and panic about having signed that little piece of paper. Started hearing on repeat every one of those risks, and there was always one that stuck out brighter and more terrifying than the rest: Unrecoverable Catastrophic Airway Fire. I still have nightmares. I can literally see my tiny little baby Dominic bursting into flames and burning from the inside out. That’s the very real side of signing that bit of paper that no-one can ever understand until they do it. I am consenting to the possibility of my baby dying in a horrible painful way. All the odds and statistics in the world are never going to cure those nightmares. I can see it even now, in full technicolour. It terrifies me.
At the end of the day, rational, sensible people like us will always sign the form. We have been taught to put our trust in those people that have studied for decades and feel confident that our trust has not been misplaced. But that ‘what if?’ just gets worse and worse and worse until you get the phonecall “Dominic is back on the ward now if you’d like to come back, the surgeons will be down later to explain how it went.” and you get there, and you look through the plastic, put your hands through the little holes and hold those tiny little fingers, watching their chest rise and fall, seeing the reassuring stats on the monitors… then… and only then… can you reconcile with your conscience and feel that you made the right decision – because he came back. He’s still here. He’s taken another step to getting better.