My thoughts…

The case of Charlie Gard has been weighing on my mind for quite a while and I’m finding it all really quite upsetting. It is definitely trudging up a lot of thoughts and feelings about Eilys. Maybe we should have tried her in a drug trial or kept her alive with machines, maybe we should have ignored our Doctor at Alder Hey and found another who told us what we wanted to hear. If we had, maybe she’d still be here. Maybe.

We were offered a drug trial. In fact there were 2 going on in the UK when she was diagnosed and we did look into them but decided against taking part. One was in London and the other was in Newcastle. Both would have meant travelling to and from either place once or twice a month. Both would have meant handing Eilys over to some researchers for a few hours and possibly some painful procedures (I think possibly a spinal tap type thing and drugs being administered to her via her spinal fluid, I can’t remember now it was a long time ago since reading about it). And then we could have done all that only to find that it didn’t work or it made her symptoms worsen or worse still that it did work and that Eilys had been in the placebo group.

But ifs and maybes like that wouldn’t have been for her. It would have been for us. Her quality of life would have been lost. If she’d been in the trial it might have been painful for her, we’d have had to spend time away from her which would have been awful and the travelling might have taken its toll on her health. If we’d opted for more invasive action to keep her alive (full ventilation and intravenous drugs etc) she’d have been pretty much in a bed the whole time or in hospital and it would have been near on impossible for us to give her squishy cuddles and nuzzly kisses or to pick her up and just hold her. Yes, she might be here still but at what cost and who for? This past year would have meant that me and Joe split our time between here and hospital or we’d have a house full of medical machines etc and homecare nurses coming and going or we’d have been stuck in hospital all the time, most probably Alder Hey.

And what about Dylan? He would have surely suffered. He’d have to watch all this happening to his sister who he loves with every fibre of him.  We’d not have been able to take him out to places or do things with him and he would have been sidelined. If that had been our reality I’m sure we’d have tried to make it work out that we’d have the time to parent him properly but I still think it would have done harm to him in the long run.

We have already had all this guilt and regret brought up once and I’m sure things will keep happening that’ll make us think “what if” and “maybe” and “why didn’t we try harder?” On 23rd December 2016, a little less than 6 months after she died there was the news that one of the drug therapies that were being trialed had had the trails stopped and the drug was being hailed as successful in halting and in some cases reversing the progression of SMA.  Full information on this can be found here and here and here.  Everything that I have read in regards to this are showing improvements in Type 2 and Type 3 children but I am not sure about Type 1 cases like Eilys but still, the pain is real that there might have been something that we could have done for her. As a parent, you really will do anything for your children and I honestly believe that we did that for Eilys. I really didn’t want her to be poked and prodded and used as a guinea pig but I can understand why some parents choose to do that. We felt very strongly that with all the information we had at the time it would be better for Eilys to have a life filled with adventures and love rather than being dragged to one hospital or another and to have her stuck with needles and being tested on a lot.

Which brings me to Charlie Gard. I have been thinking about blogging about it for a while but it didn’t seem like the right thing to do. The reason I am doing is because like I said, it really is weighing on my mind now and I need to vent a little bit on the subject. First of all I am in no way a medical professional and obviously I do not have all the facts and figures to do with the case. In my reading about the case, and I have really tried not too because it is really upsetting me and bringing back a lot of memories, I have been looking for more reputable and less emotive news articles. I haven’t read anything from the tabloids and have tried to read well balanced articles that are fact based rather than emotion driven. This Facebook post is really insightful if you’d like to have a read it is here. I really am getting to the stage now where I am trying to figure out why the media are banging this drum as they are. It is getting to the point that Great Ormond Street Hospital will be losing charitable donations that they rely on so heavily to do the incredible work that they do and I don’t really see how that is going to benefit anybody!

In recent days there has been news reports that families other other sick and possibly dying children have been verbally abused on the way into the hospital by “Charlie’s Army” who are protesting outside GOSH. And now there are reports that members of staff who are helping Charlie and others like him are receiving abuse on their way into work, or leaving work, and then getting trolled on social media and some are even getting death threats! This is getting really out of hand now, GOSH are doing a fantastic job with so many children and this case is dragging their name through the mud.

These doctors are EXPERTS. They have taken the Hippocratic oath. They’re not saying they want to withdraw life support because they can’t be arsed with him anymore, they think it is the kindest thing to do. Abusing staff and other families who are visiting sick children is absolutely disgusting. This one case is going to cost GOSH so much money in charitable donations and it’ll be other very sick children who could be helped. Who will ultimately suffer and that is the tragedy.

Just ask yourself, who are they keeping Charlie alive for? Because it certainly isn’t for Charlie. He is facing a life potentially filled with painful procedures, tubes stuck here and there and at best, passively experiencing the world from his bed. It’s heartbreaking but a 10% chance of improvement is rubbish odds – not even specific improvements either. 10% chance of an improvement. My heart really goes out to him and his family but I’m not sure who they are fighting for.  Doctors in the USA have a very different mind set to those in the UK. In the USA, medical care is driven and paid for by insurance or just paid outright by the “customer” and the cynical side of me thinks that maybe the Doctor offering this “miracle treatment” could be pushing it from that angle, the parents have the money to pay for the treatment so why not. Whereas the UK Doctors are thinking more about the ethical side of what the treatment actually means for their patient, Charlie.

With everything that happened with Eilys we felt so passionately that we didn’t want her to be artificially kept alive just to make it easier on us. Ultimately we would have had to turn those machines off. We didn’t want her to be a passive participant in life. We wanted her to enjoy her life even though it was short.

My main issue with the Charlie Gard case is that I feel that his parents are wasting his life going to court, they should be with him for whatever time he has making memories with him and telling him that he is so so loved. They won’t look back in 10 years and think “I wish we’d spent longer in court” No, they wished they’d spent their time at Charlie’s side. We were so incredibly lucky that we spent the time that we had with Eilys doing the things that we did as a family, those memories are so precious and they really do get us through the darkest days. I really do just want to shake Charlie’s Mum and Dad and tell them that this time that they have now is so so special and that not spending it with their beautiful boy is not the right thing to do, especially as it seems to be bringing them nothing but stress and upset.

In the interests of honesty, I did donate to the Charlie Gard fund a few months ago. I saw something that one of my friend’s shared on Facebook and I thought back to all the kindness we had been shown by strangers with Eilys and I donated. I really wish that I had read a bit more about the case before I had donated though. I have since donated the double the amount to Great Ormond Street Hospital. If you would like to do the same please do so here.

***UPDATE***

I’m getting really tired of these misinformed, idiotic keyboard warriors on various posts on Facebook and Twitter and the tabloids around the Charlie Gard case.  It is very upsetting seeing this story in the media and having made a lot of these awful choices myself but when these people who know nothing are bleating on about how GOSH are so wicked for not letting them take him home is ridiculous and misinformed. From personal experience with Eilys, I know that the sad fact is that the ambulance service NHS or private probably wouldn’t transport him for starters. There is too high a chance he’d die in transit which is terrible but very possible. Secondly the amount of medical equipment and specialist staff that he would need to go home would be phenomenal and probably wouldn’t fit i n their house (the oxygen compressor we had for Eilys for her occasional use was 2 huge machines which took up about 4ftx4ft). The staff required would need to be round the clock intensive care nurses and where are they suppose to come from? Not only that but these things take a lot of time to set up and put in motion, not a few hours or days but sometimes weeks and maybe longer.

Hospices for children are wonderful places. The staff are so welcoming and caring. It really is the best option as they are set up for end of life care and they really are amazing. I cannot fault the one we went to for visits (Eilys did die at home). The care and support they offered us up to and after her death was incredible. Some of them even have a special cololed room so that you can spend some time with your child after they have passed away, which I am sure would give them some comfort. When we were first offered hospice care for Eilys we flatly refused as in our heads a hospice was a very grown up, very sad place but in reality they are just fantastic and more like a really lovely children’s play centre.

Yet again, the tabloids are being sensationalist making it out that GOSH are being difficult when this simply isn’t the case.Charlie’s care is too intensive for him to be sent home it is unfair and not right for a brilliant hospital with incredible staff and an amazing track record to be dragged through the mud day in day out for trying to keep the best interests of a terminally ill baby at the heart of a heartbreaking decision.

Right, that’s off my chest a bit now. Sorry but this whole case is trudging up a lot of memories and making me question my choices, choices that I know in my heart were right for our daughter. I can hand on heart say she didn’t suffer. I can hand on heart say all our choices were made for her and not for us. And I can hand on heart say I’d choose the same things again.

 

One thought on “My thoughts…

Add yours

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Powered by WordPress.com.

Up ↑

%d bloggers like this: