I am on a path to create entertainment, words come, music too, studio 96% ready(!), workflow being grounded etc etc… Close to creating music and visuals then. The big step to get into production… And I’m trying to carry on with that – as we face the imminent future with our soon to be born Jon Freddie Slater who is 30 weeks now. This blog gives an update of where we’re at with Jon’s Journey and tells the story as it is today…

I learn about faith and healing, about how and what Jesus did. ON my mission to have heard the bible by end of January I have done the New testament and am a quarter way through the old – lots of goats being burnt in Leviticus at the moment!

And… I want to see something has changed on the scan next week. I want to see him healed… My mind grapples with the reality of what we face and the proven ability of Jesus and my faith in him to heal. ‘Help me in my un-belief’ it says in the bible. I believe and yet…

Christiane is being amazing – a Tigress for her cub. Devouring teaching from Andrew Womack on healing. We heard of a guy called Smith Wiggleswick the other night as we listened together, now there’s a name. Probably from the same town as Bradley Wiggins.

I am having to address the practical  of course, the medical diagnosis, the ‘Best Interests’ philosophy that from our lead hospital Addenbrookes which means no intervention just deliver, prompt to breath, clean airwaves, wrap in a towel and give to mummy… and see how long he lasts. It does land with me as Spartan Care – the Spartans used to put their children on mountain sides, I read, to see if they were strong enough to survive. Harsh words from me? Just factual, I am wanting hope and a possible fight for life, rather than a “roll over no point in doing anything because he won’t live long anyway.” When seen in writing the non intervention is stark. Addenbrookes is a T3 hospital for children (a very good one). A regional centre for us, they have paediatric surgeons and apparently great facilities. But these are denied to us at this time, so what’s the point of Jon being born there then?

We are blessed to be a country where we can have Consultants give us advice for free and free healthcare. We have been treated with time and consideration and I can understand the dilemma a Doctor faces in this position yet… To not hold out the possibility of evaluation at birth, once we see Jon Freddie in the world lands with me as heartless and a Life Sentence that has been pre-judged without all the evidence being considered. Harsh and unfair.

We have sought guidance on the ethics and legal position of this from a Doctor who has studied ethics in regard to medical practise and has experience of this type of challenge.

‘…the important principle here is the best interest of the baby; a notion which has moral and legal value. How that is defined is usually in terms of potential for development, avoidance of suffering and parental involvement. The Children Act 1990 and subsequent common law amplifies this.

In UK, clinicians and common law tend to run with “best interests”. In these neonatal cases, that is exemplified by symptom control, the avoidance of suffering and tender loving care, rather than the preservation of life; however long the life may be. In Patau’s syndrome it is known that life is not going to be long. Treatments that may only be characterised as burdens rather than benefits (surgery etc.) are morally difficult to justify. Legally they are not usually sanctioned.
Ultimately there are few neonatologists who would differ from this view. They will have differences of view where there is a case of gestation length affecting the possible prognosis for the child, but in severe genetic disorders most will tend to apply the “best interests” principle.
OK and we agree – Best Interests, no surgery just for the sake of it, no ‘Bridge to Nowhere’ life support that Jon could not sustain. However the other end of the debate is, as our expert explained.
The Sanctity of Life Principle is a very relevant issue incorporating the view that life should be preserved at all costs even when there is little hope. His view and that of the majority of physicians will seem dispassionate and hard to bear for parents who hold to this principle, commented our contact who received his feedback. (Thank you Mary.)

The key phrases in this Sanctity of Life section to me are – preserved at all costs and  is – when there is little hope...

We just want a chance of having some help if it can help Jon live better and longer – that’s all… We don’t want a wall that says NO. No assistance, no food if he can’t eat, no air if he can’t breath properly…

How will we know how he is until he is born? Scans yes, diagnosis yes but – no intervention – when he’s there kicking and alive and may need his tummy expanded or a heart massage – oh sorry no that’s not allowed!!!!

Definition of hope, also, definition of the value of life. We have read of many T13 – Payau Syndrome children who have died early – minutes, hours, months and one’s who have lived far far longer – one young man is eighteen, others older. What value, using proven medical resource and skill to give that child the chance to live longer, providing it is it not distressing the child just for the sake of it? Surely there is a middle way and not just a closed door.

I had a proper job for five years once, and only once. It was for the Shaftesbury Society a Charity which provides care support for children and adults with a disability and that are homeless. Eventually I choose a title of Marketing and Communications Director for myself. I did some things I am proud of in my time there and was rubbish in some other areas… Another story. But it’s an interesting time to draw on as I spoke with young people who had a disability. I enjoyed being beaten royally at pool by residents, whose lower body was not like mine but were brilliant pool players. I loved being given an education in how to communicate to someone in a wheelchair, from a young man in that chair – “Don’t talk about me, don’t talk from behind me, being on my level is better… I am a normal person so be normal.” – I loved to sit on the floor and have everyone in a wheelchair in a circle around and above me…

On the cover of The Annual Report one year – which I was responsible for and had artistic direction over – I decided to put a picture of a lovely young lady who was laughing. Her face filled the cover of the Report, Only a small Shaftesbury’s logo and Annual Report text at the bottom overlaid this picture. It had fabulous energy. Now Helen lived in one of our centres in Bournemouth and I would see her every time I went there. I think we had a bit of a flirtatious moment together (I am probably flattering myself)  – but we always had  fun, and her carers always wound us up a little as a bit of fun. Helen was (and I think probably is) a star. And so Helen, rightly and brightly, she starred on our Annual Report that year. It is something I am proud of having done.

Why is this memorable now? Because Helen is severely disabled, she could not talk, but my, she could express herself. She could move her arms but not with what we would say was with normal control. Her wheelchair provided strong support for her whole body – most of her movement was from the neck up and yet – SHE HAD LIFE!!!! WOW SHE HAD LIFE… The care and support Shaftesbury gave was summed up by her laughter and joy. That’s why we were there. A picture tells a thousand words they say… Indeed.

Did Helen have medical support when she was born? Was she thought worth helping? She did not have Patau Syndrome, but she is not a whole complete human being by traditional views in that her abilities are not fully realised. Who decides on intervention? Who decides there is no hope?

All I know is that Helen brightened my days when I saw here and summed up why a whole army of over one thousand staff and many volunteers served people in need.

Ipswich Hospital meeting yesterday felt more promising. At least the possibility of seeing Jon alive and kicking and maybe helping with breathing a little, heart going, maybe a feed at first – all to be evaluated as we go. If he’s strong apart from a tummy issue or some other issue then surgery may be needed to sort that.

But we may then find the hospital, with the facilities to provide that surgery, refuses it… Step by step… So Ipswich does not have surgical ability for children. But then you can be in the nicest, poshest, most respected and brilliant centre in the world… but if you can’t access the surgeons or equipment – well… I repeat myself.

I am excited about creating entertainment for people, in many ways entertainment can be ‘Make Believe’ – the old projector in the picture above would have shown many black and white escapist movies in it’s time.

I stand between ‘Believing Jon will be healed’ and managing and addressing the ‘what if’s’ and ethical and practical issues too… I find the practical can drain my faith. It’s almost as though you are hedging your bets rather than simply not bothering at all about the medical… Maybe that’s the place of true faith.

Come on my son….

Love N


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