MAKE BELIEVE?… AND ETHICAL DILEMMAS

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…

FAITH?
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.

NO INTERVENTION…
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.

ETHICS AND DIFFERENT POSITIONS
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.

HELEN – AND THE SHAFTESBURY SOCIETY… 
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.

SOME HELP IF NEEDED?… IPSWICH…
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.

MAKE BELIEVE?
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

7 thoughts on “MAKE BELIEVE?… AND ETHICAL DILEMMAS

  1. Nicky

    Christina again.

    Oh my dear God tears are streaming down my face as I recall the turmoil and agony of the decisions you may have to face. If you recall I replied to your earlier blog and told you about our beautiful daughter with T13, Georgina. So I do know, believe me, how impossible it is to make sense of the different scenarios you may face. You, my friend have more time to consider the possibilities than we did. I am not sure if this is a blessing or a curse? We did not know a single fact about Patau Syndrom until the day she was born. So had less time to consider options for care/treatment. We just careered from crisis to crisis and made the best decisions we could. I just want to say two things to you and they are both fairly obvious….

    The first is….whatever decisions you make, imagine yourself in 5, 10, 20 years time trying to explain them to a stranger. Are you comfortable saying the words. No matter what those words are. I thank God that after 28 days and several crisis, I am able to tell people…..”it was time to let her go so we held her and listened to her breathing becoming shallower and less frequent. She died surrounded by those who loved her most”.

    Secondly I would say this….no matter what the scans show, what the medical assessment and prognosis is never underestimate Jon’s own will. He will call the shots. If he wants to fight – he will and you will know it. When he is tired and has had enough fighting (and it has been 30 weeks now) you will know.

    Nicky, you and your family are constantly in my thoughts and prayers. I pray that you will have some time with Jon and that you are able to cherish each moment in his presence . God bless you.

    Christina

    P.S. I am a believer too – but it didn’t stop me constantly demanding why God allows this to happen to innocent babies. A very humane priest friend told me. “Keep asking him, ‘cos I sure as hell don’t know. But as long as your asking, your still believing”

  2. Did you know that the survival rates for children born with trisomy 13 were greater in the 60’s than they are now? Here is the study: J Pediatr. 1968 Aug;73(2):222-8.
    Trisomy 13 (D1) syndrome: studies on parental age, sex ratio, and survival.
    Magenis RE, Hecht F, Milham S Jr

    In the 60’s, 14% of children with trisomy 13 survived to one year. So what happened? Once the condition was identified and known to be associated with disabilities, basic care was withheld. In fact, there is an international guideline (Called ILCOR) that recommends that infants born with trisomy 13 should not be resuscitated at birth due to risk of early death and “unacceptable morbidity” among survivors.

    A major international study published in a leading pediatric journal this past July, revealed that some children with trisomy 13 do benefit from interventions. Every child is special and unique. The presence of the common brain abnormality, holoprosencephaly, can be a lethal condition on its own. However, some children with trisomy 13 do not have that. VSDs often close on their own but research showed that there was a 91% rate of success among children who had heart surgery.
    Surviving children are severely disabled. However, overwhelmingly, their parents describe them as happy and report that they enrich their families and are a good thing for siblings, especially in terms of the adults they will become. Almost all parents say they would do it all again, despite the many challenges.

    I would suggest that you contact Dr. John Carey, Editor-in-Chief of the American Journal of Medical Genetics. He is the most knowledgeable person in the world on trisomy 13 and started a support group with a mother 25 years ago. Regardless of your decisions, if you obtain comprehensive information, and your decisions regarding plan of care are as informed as they can be, you will benefit from piece of mind down the road.

    Here are some resources of children with full trisomy 13:
    Video: 18 month old: http://www.youtube.com/watch?v=5Ywc8vzaOmg
    Article:
    Pediatrics. 2012 Aug;130(2):293-8. doi: 10.1542/peds.2012-0151. Epub 2012 Jul 23.
    The experience of families with children with trisomy 13 and 18 in social networks.
    Janvier A, Farlow B, Wilfond BS.
    Source

    Department of Pediatrics and Clinical Ethics, University of Montreal, Neonatologist and Clinical Ethicist, Sainte-Justine Hospital, 3175 Chemin Côte-Sainte-Catherine, Montreal (QC), H3T 1C5 Canada. annie.janvier.hsj@ssss.gouv.qc.ca
    Abstract
    BACKGROUND:

    Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers. After a diagnosis, parents may turn to support groups for additional information.
    METHODS:

    We surveyed parents of children with T13-18 who belong to support groups to describe their experiences and perspectives.
    RESULTS:

    A total of 503 invitations to participate were sent and 332 questionnaires were completed (87% response rate based on site visits, 67% on invitations sent) by parents about 272 children. Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). They were also told by some providers that their child might have a short meaningful life (60%), however. Thirty percent of parents requested “full” intervention as a plan of treatment. Seventy-nine of these children with full T13-18 are still living, with a median age of 4 years. Half reported that taking care of a disabled child is/was harder than they expected. Despite their severe disabilities, 97% of parents described their child as a happy child. Parents reported these children enriched their family and their couple irrespective of the length of their lives.
    CONCLUSIONS:

    Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.

    • Barb hi
      I can’t remember if I wrote but thank you for this information.
      It is not irrelevant as I will be posting a resources section and have been hearted to read Annie’s survey in particular.
      It is great that you took the time to let us know.
      Thank you for caring.
      Love Nicky

  3. Another new publication authored by Dr. John Carey- editor-in-chief of the Am J of Med Gen.

    Curr Opin Pediatr. 2012 Dec;24(6):672-8. doi: 10.1097/MOP.0b013e3283595031.
    Perspectives on the care and management of infants with trisomy 18 and trisomy 13: striving for balance.
    Carey JC.
    Source

    Division of Medical Genetics, Department of Pediatrics, University of Utah Health Sciences Center, Utah 84108, USA. john.carey@hsc.utah.edu
    Abstract
    PURPOSE OF REVIEW:

    At the time of diagnosis of the trisomy 18 and trisomy 13, parents and care providers face difficult and challenging decisions regarding management. Because of the increased infant mortality and developmental outcome associated with both conditions, the conventional approach to management has been to withhold technological support. In recent years, an active dialogue on this topic has emerged. The purpose of this review is to summarize the literature on the outcome of infants with trisomy 18 and 13 and to discuss the key themes in this emerging dialogue.
    RECENT FINDINGS:

    In recent years, several important studies have appeared that have analyzed the issues relevant to this topic, including parental autonomy, best interest of the child standard, and quality of life. Some authorities state that in areas of ambiguity it is best to defer to parents’ views, whereas others indicate concern that the best interest standard has given way to parental autonomy. Information on the actual experience of parents of children with trisomy 18 and 13 has been limited until recently.
    SUMMARY:

    The author recommends a balanced approach to counseling families of the newborn with trisomy 18 and 13 at the time of diagnosis. The counseling process should include presentation of accurate survival figures, avoidance of language that assumes outcome, communication of developmental outcome that does not presuppose perception of quality of life, and respect for the family’s choice, whether it be comfort care or intervention.

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