Taking a moment to be thankful

Katie Garden - 21 Jul 17

Recently there have been a few stories in the news about parental rights and really sick children, where the parents are in dispute with the doctors about whether treatment should carry on or whether they should let the child go.
I’ve read so much about the stories – I can’t stop myself. I read with one eye closed because it’s so close to home, and it’s agonising to watch and relive but I can’t look away.

I understand that this is one of the most emotive topics, that each case is individual, and that opinions will very much be split on this. This is in no way a dig at parents who are fighting for their children; I hope with everything in me that their kids pull through and they get that miracle. But the more I’ve read, the more I’ve panicked and convinced myself I should have done more for Sophie. I’ve read so many comments from people saying things like “who wouldn’t fight for their kids?”, “if it was your child you would do anything” etc. And I have questioned my decisions as Sophie’s parent. I should have fought harder. Maybe I was just sick of being in ICU, maybe I let her go before her time because selfishly I was too exhausted to carry on fighting for her.
I know I’m not the only one who has had to accept that medically nothing more can be done for my child, and allow her to die.

So this blog is really me re-convincing myself (and maybe others who were in the same situation as us) that we did make the right decisions for us, and we were good parents too.

When Sophie died, she pretty much decided herself to go, and in a lot of ways she took the decision out of our hands. Days before, we had had a meeting with Sophie’s consultants who told us we needed to start thinking along the lines of Sophie not making it, and us having to make a decision to turn her life support off. We agreed; we hoped they were wrong, but we agreed. The day before she died, the consultant spent hours trying to get lines into her little veins that were collapsing. He couldn’t. He told us then that she wasn’t going to pull through, that she was deteriorating and that we will probably reach a point where we are keeping Sophie alive for the sake of it and he would then need to advise us to turn the machines off and let her go. We agreed. We still hoped, but we knew and we agreed. We told Sophie it was okay to stop fighting now if she needed to.
The next morning we were called in very early because that time was coming. When we got to the hospital the consultant told us we were at that point, that Sophie was now ready to go and we were keeping her alive, basically, for us. He said it could be hours, days that this could carry on for but that to be honest they were struggling to even keep her stable even with the maximum support, and it looked like it was getting close to being time. We agreed. Sophie must have overheard, and being Sophie, had to do things on her own terms. So that hour she left us, peacefully, in our arms. We removed her ventilator but I believe she was gone anyway. At the time I felt it was right, devastating, but right.

The last few weeks as I’ve been reading stories in the news I have started to torture myself mentally with the what if’s. What if we hadn’t have agreed with the doctors? What if we had looked further for treatment elsewhere? What if she was just having a wobble that day (God knows she had enough of them those 6 weeks) and would have pulled through if we had just kept trying, just pressed the crash button instead of turning the monitor off & holding her, if we had begged the doctors to keep trying and refused to let her go? What if the doctors were lying about how sick she was because they wanted the bed for another patient? What if I was a bad mum for letting her go?

I think the answer is no I wasn’t a bad mum, at least not because of this. But it’s taken me a long time to come to this conclusion, and I can well imagine I’ll need to remind myself of it many more times before this is over. But I think my point is when emotions are high and things are the shittest they will ever be, it’s so easy to convince yourself that everyone is against you and your baby, even when you know logically that’s not true. We had one consultant that we renamed Dr Doom because he only ever brought us bad news. If he even walked past Sophie’s bed space I physically tensed up, and we had many a heated discussion over Sophie’s care. I convinced myself he wasn’t interested in her getting better, despite me having witnessed him fight for her life himself several times. He stayed late past the end of his shifts to refit lines for Sophie on more than one occasion, he was there in the darkest of days fighting with the other doctors to pull Sophie through, and he tolerated me being an absolute crank. Many of the nurses told me that he is the person they would want if their child was in ICU, and they would trust him with their child’s life. Now I can see why; I couldn’t then. I couldn’t because I was in the thick of it, and I associated him with all our bad news, unfairly I now think.

We trusted the doctors and nurses in ICU. The last few weeks I have wobbled and thought maybe I shouldn’t have. But I know that I was absolutely right to. Yes there may be times where doctors get things wrong, I do get that. But I feel like sometimes the balance isn’t right, and too many times the doctors and nurses get a bad press in these kind of situations, so this is just my experience, from my point of view. Not one of the members of staff in ICU were against Sophie; they fought for her with us, every single step of the way. Despite Sophie dying in there, I feel more grateful to them than anyone else in my life. Because they didn’t give up on Sophie, and they allowed us to not give up on her too. We trusted them when they said she had had enough. And I can tell myself I was right to, because I was. I was right to let her go. She would have gone anyway if I’m being honest with myself; had we pushed the doctors to keep her alive that day it would have been for us, not for Sophie – we would have been prolonging her suffering at that point. I said to Lauren the other week that maybe we should have looked at treatment in America as so many others have; Lauren’s reply was “Kate you couldn’t even change Sophie’s nappy without her having a meltdown and all her numbers crashing, she wasn’t going to get on a plane”. She was right. But it’s so hard to remember those bits when it’s your baby that you let go. We have met a lot of people who are angry with the NHS, some of them rightly so. But sometimes it’s easy to direct the anger that you feel about having lost your baby at someone – the doctor, the nurse, the parent, yourself. I hold myself responsible for Sophie dying even though I know full well I had absolutely no control over it. We had a good experience of the staff, maybe others don’t.

So I just wanted to say my piece; to take a break from the self reproach and remind myself out loud that I made the right choices in fighting for Sophie to have a chance at life, but also in allowing her to go when the time came. And to say at a time when NHS staff are being accused of lying, scheming to steal parental rights, even being called murderers etc etc, that this wasn’t our experience. We experienced genuine care, professionalism, love and honesty from the staff who looked after Sophie, and I will be forever grateful to them for the way they looked after us and Sophie in the worst time of our lives, and in Sophie’s living and dying. To any of you who may read this, thank you, from the bottom of my heart.

Katie Garden

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