Charlie

I have been asked a few times for my opinion on the court case and situation of baby Charlie and I have refused to express any form of opinion. We were even invited to the BBC to do an interview for today on the matter, as parents who have been in the situation. We already had plans to take the boys out but to be honest I would not have wanted to be interviewed on the subject anyway.

The reasons for this are varying but some of which are of a personal nature from myself. Having previously had my words twisted and feeling personally attacked by comments I did not want to be back in the 'limelight' nor open myself up to more abuse. I have had some horrible things said to me over the last 6 months, some of which have caused deep emotional scars and left me a different person unable to socialise properly with others but I digress a little.

I also feel my opinion would always be seen as coming from the mother who 'wanted to turn off' her son's life support therefore it will paint me as biased and potentially unsympathetic to the parents' cause which is NOT the case at all. It is an impossible no win situation and I think the parents have been so strong in their fight, and I hope their strength helps them through what lies ahead of them next.

Our situations whilst similar were also different and unless you know all the facts it is impossible to side with the parents or the doctors and give a fully informed opinion. The truth of OUR situation was that Dylan was suffering and deteriorating rapidly. Putting aside his 'miracle' recovery for a moment and just looking at the facts of the 48hrs prior to switching off the Rocuronium (paralysing drug)...

We had 'potential' treatment options to buy him more time such as Ecmo or transplant but Dylan's oxygen levels were critical even on the highest oxygen level and vent settings and every time we even tried to move him for an X-ray he deteriorated more so there was no feasible way he would have survived a journey to another hospital let alone either procedure. We had no other options it was that simple. We could either turn his life support off and pain relief up to let him slip away peacefully and pain free in our arms or we could sit back and watch him deteriorate, clearly suffering, and then go in to cardiac arrest suddenly as he was at risk of doing 'any moment' overnight at one point. Now tell me, if those were your only two options.. which would you rather?!!

Yes that never happened and by some sheer miracle turning off the Rocuronium was enough for us to see he needed more sedation*  and once comfortable his heart rate stabilised and he gained enough strength to start to fight back** gradually but that isn't what usually happens. I do not want our story to be the thing that provides parents in this situation false hope, especially now the ability of Intensive Care doctors may now be questioned more in these sort of situations.

*2-3yr olds are notoriously hard to sedate AND he also has potential EDS which burns off sedation even faster.. normally what he was on would be enough to sedate a young adult.

**this and blood tests confirming his organs were still functioning caused us and the consultant to STOP the process of removing life support. He remained on ventilation without the Rocuronium drug until he was stable enough to breathe by himself again 9 days later.

The ONLY comment I will make, for any parent facing such a heartbreaking decision, is this and it is partially a quote from an intensive care consultant.. There comes a time when you are doing things TO the child and not FOR the child. And that is what must be considered in these situations. Parenting means putting your child's needs first and yourself second. </3