Thursday, June 21

Choosing to See

One dilemma for parents of ill children, particularly very young ones, is choosing how much to watch with the consent of the medical team; how long to stay and when to leave. As well as being there for your children, you have to protect yourself as you are the adult living with the knowledge, the memories and the decisions.

I was watching the fabulous yet emotionally wrenching Great Ormond Street on BBC 2 this week about pioneering and experimental surgery. One brave set of parents were asked an incredibly difficult question: if an operation was going wrong, would you want to be brought into the theatre to be with your child? I have never been in this exact position, but I have been asked a similar question. When Wriggles was in Intensive Care and had her cardiac arrest, one of the doctors who wasn't doing life saving procedures gently suggested I might want to leave.

I didn't.

"Are you sure?" a nurse gently asked. "It can be very distressing."

I stayed. To her immense credit, my best friend who had happened to be sitting with me at the time, stayed with me. I'm not sure I could watch someone else's child go through that.

Although since I have been haunted by the memories that have been fiercely burnt into my mind, I don't regret it. Some people might see it as rubbing salt into a wound, of doing further harm to yourself, of not looking after yourself. It is a very personal thing and one that I think can only be truly decided by the exact circumstances in that exact minute, and the severity and gravity of the situation. Obviously your own beliefs also play a part and your knowledge of your capabilities. 

When Wriggles was is NICU, I preferred to stay with as many procedures as they would let me. I stayed for the head scans, the retinopathy exam, the blood tests. I stayed when they had to stimulate her at times if she lost colour and had apnoeas and bradycardias. I don't think that this makes me a better person than someone who couldn't stay at all. Everyone knows what is best. In NICU, a large part of staying for procedures stemmed from a sense of guilt and a very precarious mental state that I was in. Yes, of course I wanted to stay for Wriggles' sake but also I felt I had to. As I have written about before, the very early days were a minefield that were dictated by pure shock and with no roots in emotion or rationality. The guilt from this once it passed was horrendous and taunted me that however much I loved her, I could never make it up from the ambivalence of the first days. Of course this isn't the case. I know now that shock and trauma breeds automatic responses that don't reflect love, passion, family, memory or truth. I became a little obsessed with the idea of staying by her as a mark of my devotion. Luckily, I didn't see anything too horrible and was rewarded by being able to sneak extra cuddles as compensation. Had our journey been far more rocky, it could have been a different kettle of fish so close to that time.

Intensive care at 6 months old was a different situation. I was mentally a lot more "with it" and had allowed myself to fall hopelessly in love with my daughter whom I had cared for, for four months since discharge. I didn't have the same conviction that leaving the room was the equivalent of deserting her for good. However, I still stayed throughout the ups and downs. This was very different though: in NICU, she was very sick and very fragile from prematurity. But, aside from the first week of her life, there wasn't a point that either the medical staff or I believed her life was endangered. Vulnerable, yes. Developmentally uncertain, definitely. But on the absolute brink? If anyone thought so, they never said. In intensive care though, she was in a very critical position. At the beginning of the stay, although I wanted to be with her, with persuasion I could walk away and sit next door when they intubated, x-rayed or took bloods from her. At this point she wasn't yet critical so I was confident that I could come back and she would still be there; be mine. The ties became much stronger over the coming days as she became sicker. By day 4 of PICU when she arrested, I was thrown into the dilemma: do you want to watch? 

There was no way I was leaving then. If, in that split second as I had to acknowledge, I might loose her then I wanted to be with her. I wanted the person that loved her most to be within touching distance if the unthinkable happened. It's a funny parallel: you simultaneously never give up hope and believe stronger than you have ever believed in anything in that moment, but at that same time, you have in your face the very real fact that life is hanging in the balance. It is like being on a tightrope, but hugging it tight, so tight as if you will never let go and that is what will save you. I felt the same when my dad was critically ill a few years prior-you don't allow yourself to project that life will cease but yet you know it may and the fact nips on your heels as you run on, believing in love and life. And this is the point where only you can choose what to see. Some people will need to stay; some will equally need to go. There is no wrong and no right. One parent may need one thing, and one another. Each may have regret afterwards, but that will vary massively on the outcome.

We were the lucky ones.

One minute thirty seconds.

It could have been so much longer.

It could have been so much quicker.

It could have been a different story altogether.

Could I do it again? I hope against hope I will never ever have to. It is not something I could ever forward-plan. Ours was a one-off episode and thankfully Wriggles has never been that severely ill again. Yes, poorly, yes needing support, but never like that. Watching and listening to stories of families that live that state for infinitely longer was utterly humbling. Both the children and their parents have strength beyond anything you imagine when your child is first placed in your arms, or through an incubator porthole. Love is a force that truly is incredible.


  1. What a great post.we are so lucky we never had a conversation like that about gemma even though it was really bad at times. When she was critical we were offered a room on nicu,in case but that was it.
    In nicu I left for intubation and long lines but stayed and held her or watched for everything else.
    When she choked on her own vomit and needed resusitated on the children's ward I was taken out when the resus team arrived although watched in a daze at her lifeless grey body. I was so involved in her care but froze when the initial nurse asked me to switch the oxygen on!luckily other nurses ran in at that point.
    Sam x

  2. If I were in the room when something happened, however distressing, I don't think I could walk out on my child. I'd feel like I'd walked out on her when she needed me. Choosing whether to be present for a planned procedure is another matter. I think it would depend if she were awake or not. And even then, there are times when she behaves better if I'm not there. I guess it woud be played by ear at the time. Interesting post.

  3. What an interesting post. I have never been in that situation with either of my children so I have no idea what I would do if faced with the option - definitely food for thought. My instinct would be to say I'd never leave my child but you just can't know for sure can you?