Daisy would have been 18 this month

I've just reached a huge milestone in my life without Daisy.  This is the month that she should have turned 18.  It was a day I dreaded when she was alive and fills me with a whole range of emotions now that she's no longer here.

Daisy watching Disney on Ice's Frozen on her 12th Birthday

22nd December 2004 was the day my life changed beyond measure.  The day that Daisy Rose arrived into the world, blue and angry and determined to show everyone who was boss.

It's a bittersweet day in so many ways, loaded with meaning and memories and significance.  I'd been so ill in the weeks before Daisy's arrival, mainly in hospital, pumped full of steroids, with regular procedures to try and reduce the significant amount of amniotic fluid which was threatening to trigger a dangerous, premature birth.  I'd only been allowed home for very short periods, to wrap the children's Christmas presents and get ready for what was going to inevitably be a premature baby.  The instructions I was given each time I went home was that if my waters broke I needed to get down on the floor with my bum in the air to prevent the umbilical cord prolapsing, and to call for urgent help.  It's still a huge relief to me that the good people of London were never witness to this event in the middle of John Lewis just before the festive season.

In the end, as I became more anaemic and developed a liver condition and it was clear that things were not right with Daisy, it was decided that her entry to the world would be carefully managed via a c-section.  And so I found myself, first on the list on 22nd December 2004 as my obstetrician sliced me open and the theatre team jumped back as waves of amniotic fluid splashed on the floor, and Daisy was lifted into the world and very quickly whisked away to be stabilised and transferred to the neonatal intensive care unit.

And so our story began, and the life I once knew was replaced by a very different life.

We were told that Daisy might not see her first birthday.  But she did.  Every year she defied the odds and we celebrated her arrival in the world, treasuring every moment and marking every year she was with us.  Her eleventh birthday was a week after her daddy died but we still made sure she had the best time celebrating.

22nd December 2016, Daisy's twelfth birthday. She was clearly deteriorating, not just physically but the seizures were also taking their toll on her cognitive abilities and her ability to tolerate crowded places and noise was diminishing.  I had bought her tickets to see Frozen on Ice in London.  We dressed her in her favourite Princess Anna dress and took the tube to Greenwich but the excitement, noise and crowds were overwhelming.  She was so happy and loved hearing her favourite songs and spending her pocket money in the shop but she was also lashing out at anyone who came too close and it was clearly all a bit too much for her.

On the train home I remember saying to Theo that it was probably the last trip out we would take with Daisy, that the sheer physical and mental effort for her was just too much and it was not fair on her, on us or on any unsuspecting person who came a bit to close to her.

Those words were prophetic as it was to be Daisy's last birthday.  It was almost as though she was hanging on for her birthday and then Christmas, her absolute favourite time of the year.  By January it was clear that the window was closing, she was able to do less and less and her health took a rapid and dramatic downward spiral.  Although she'd had episodes like this before it was clear that she just didn't have the reserves left to fight and the toll and grief of losing her daddy the year before clearly played a part.  

Daisy died in Great Ormond Street hospital's intensive care ward on the 31st January, just one month after her twelfth birthday.

And now her 18th birthday has just passed, the sixth birthday that she hasn't been here with us.

I took a card to the chapel at Great Ormond Street Hospital as I always do, I feel close to Daisy there, it was a place of quiet contemplation during so many stressful and anxious hospital stays.  It always seems to be the place I'm most drawn to on her birthday and her anniversary.

And I contemplated, this year, about what turning 18 would have meant for Daisy.  When she was alive I dreaded the prospect, because turning 18 meant becoming an adult in the eyes of the law and for the health care support she needed just to survive.  In fact in the UK, once a young person with medically complex needs is 16 the process is supposed to start to begin a two year transition to adult services, let's just say that really doesn't happen as it should.

However I vividly remember as Daisy approached her 12th birthday her gastro consultant mentioned that in the next couple of years we should begin to think about the adult services available to care for a medically complex child with complete intestinal failure like Daisy.  We agreed that the plan for transition would need to happen a lot earlier and a lot of work would need to take place to find a solution if Daisy did get to that point.

It filled me with such fear.  Daisy was always defying the odds but what if she did make it to that point.  She wasn't just a young person with complete intestinal failure, requiring 24/7 TPN and IV infusions, she also had a learning disability with autistic traits, uncontrollable multi-focal epilepsy, cardiomyopathy, neuropathic bladder, orthopaedic issues, visual impairment ....the list was endless. But most importantly of all, despite all of the medical issues, she was a young person with her own opinions and wants and needs who also needed to be cared by a medical team who knew her and understood her.  And all of that was just for her regular care.  What if she needed a hospital admission?  Adult services are very different to children's services yet Daisy would be a child in an adult's body by then.

I remember when we moved into our first house we met our neighbour Maureen and her adult daughter, Jacky.  Jacky was the last child still living at home, with Maureen who had been widowed for a while.  Her adult children helped out but it was very much about Maureen and Jacky.  Jacky had a learning disability, caused probably by a genetic disease, but she was very physically able.  She also had severe epilepsy and was unable to live independently.

I remember the times when Jacky would have seizure after seizure overnight and Maureen would tell me the next day how she'd managed them at home, desperately trying to avoid having to call an ambulance for her daughter, knowing that no-one would understand Jacky's routine, or her needs if her mum wasn't there.

Maureen died of cancer and within a year Jacky had died too.  Her death certificate had stated that she'd died following a seizure but everyone agreed that she had died of a broken heart, unable to function without the support of her mum.

"If anything happens to you Steph, I'm not sure at this point in time where Daisy could go" those words, spoken by a social worker, chilled me to the bone.  I knew it was true.  Daisy needed specialist care, because she was on intravenous nutrition (TPN), 24/7, she could only be cared for by an IV trained nurse or me. And not only were IV trained nurses prepared to do home care shifts or to be with Daisy at school hard to find, they were also very expensive.  

Everything was a battle, I'd fought so hard for Daisy's continuing care package but even when the funding was in place, it was impossible to fill all of the shifts.  And in Daisy's final year I was told that the package needed to be reviewed as it was so expensive.  I was the unpaid carer that everyone was leaning on to hold it all together.  Daisy couldn't go to school often because there would be no nurse available to take her, respite nights would be canceled when the only IV-giver available was unable to work.  And of course I also had three other children who needed me, let alone the fact that I'd not even had time to register that my husband had died only a few months before.

So that's why I lived in fear of Daisy reaching 18.  How could we keep going like this?  What would happen to Daisy if I was not there to keep her safe?  

The system is simply not set up to care for the most medically of complex children.  They are expensive, time consuming and resource intensive for commissioners to have to deal with.  So instead they are cared for by fragile network of unpaid care and extended family networks.

Daisy was never meant to reach adult hood, she worked hard at being alive and enjoying life but I knew in her final months that her window of quality of life was closing.  That last trip out for her twelfth birthday was the one that really spelled it out, she was exhausted, in pain and had no reserves left to keep fighting and I knew that this was the beginning of the end.  If Daisy had lived longer than the 6 weeks she lived after her 12th birthday what would have been the cost to her?  The frustration of not being able to do the things she loved? To engage with life in the way she wanted to? There is some comfort in knowing that in many ways she chose her time, one last birthday, one last Christmas , and then only a few weeks into 2017 she decided it was time to go.

And that's why there's such a mixture of bittersweet sadness when I think that Daisy would be 18 now.  I would never ever allow myself to imagine what life would have been like if she hadn't been born with Costello Syndrome.  She wouldn't have been the amazing Daisy that we knew, she'd be a different version, but not the one that I'd grown to love.  But she had such complicated medical issues that her wonderful personality was eventually ground down by the seizures and drug regimens and frustration.

Medical science kept Daisy alive and I believe that Daisy also chose when it was her time but the reality is many medically complex young people are surviving into adulthood, and the system is just not set up to cope.  It wasn't when Daisy was alive, now, post-pandemic, post-Brexit, even less so. We were lucky to be able to get funded respite nights, now funding has been pulled, staff shortages mean that even less nights are available and it still comes down to a post code lottery and who shouts the loudest.  Families have to hit crisis before a patchwork of help is put in place.  It's just not sustainable and carers are on their knees.  It's not surprising that a recent study shows that there is a clear link between higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition.

We can't invest in the health and science that enables children and young people with complex and life limiting conditions to live longer without the support services that are then needed to allow them to stay safe and well at home.  And as medical science means that they are living longer then it's not just about paediatrics but about transition into adult services.

It's so screamingly obvious and so desperately frustrating.  I look at my friends still in that world, fighting, day in, day out, just to ensure their child has care and is safe and out of hospital. And at times my grief is tinged with guilt that my fight is over (in some ways).

There are words of advice I give my friends over and over and they're always worth repeating:

1. Make a will! We should all have an up to date will if we have dependent children, even more so if those children are dependent for life.  Who will look after them if you can't? What are your wishes for them? Don't think it won't happen to you, it happened to us.  I didn't think that Andy would die and I would be left single parenting, but these things happen, so plan for them.

2. If your child lacks mental capacity because they have PMLD, apply to become their deputy once they turn 18 (both for financial and medical concerns), and don't let anyone fob you off that it's difficult to get.  I supported a friend to go through the process for her daughter, it means that she now has a say about her daughter's medical care, her continuing care package and her needs.  Without this she would feel disempowered (until she was needed to be the unpaid carer, funny how the system works that way...).  We found that the staff at the Office of the Public Guardian are very helpful.  Yes, there's lots of forms, but we're used to that and it's all about gathering the evidence (isn't it always).

It's new year's eve today.  Another year about to pass where I haven't held Daisy, ruffled her fuzzy hair or heard her call out for me.  It's so hard, not a single day goes by when I don't think of her.  I miss her so much, it's a scar that I will carry with me to my grave.  18 feels like such a big age, but she gave us twelve wonderful, precious years that changed our lives and changed many lives.  She was unique and exceptional and her short life had value .

I continue to campaign for those I've left behind and as we enter 2023 I've got some really great news.  Following the disappointment earlier this year when my original publisher decided not to go ahead with my latest book, Anything for my child.  A new publisher has offered me a contract and the book will (fingers crossed) be available in late in 2023.  It's a very different book from my previous two as I look at the tipping points that cause conflicts between parents caring for medically complex children and the professionals supporting them.  That book is so important because it's not just about my story, there's lots of stories in there, it's about all of us who have had to struggle just to keep our child safe and alive. It is, I hope, Daisy's legacy.  She didn't reach 18 but she taught me so much and that was her greatest gift.

As another best interest case hits the headlines - what needs to change?

 Once again another high profile case is in the news in the UK as a family navigates the court appeal system in a bid to prevent clinicians caring for their child from ending life supporting treatment.

Archie Battersbee, a beautiful 12 year old boy with a mop of blonde hair has been in a coma and ventilated since suffering a catastrophic brain injury in April.  His mother believes he was taking part in an online challenge.  He has never regained consciousness and doctors treating him have said they believe it is "highly likely" he is brain-stem dead and argue it is in his best interest for life-support to end.

His parents however have been engaged in a high profile court battle against the NHS Trust caring for their son as they appeal the decision to end life sustaining treatment.  While the view of the treating clinicians is that continuing to treat Archie is "delaying the inevitable" his parents feel that this will hasten his demise and they are not ready to do this yet.  

It's really important to emphasise here that counter to the chatter on various social media platforms disagreement between Archie's parents and the NHS Trust is is not about his recovery but about the timing and manner of his death (see the supreme court decision for more context).

In the middle of all of this is a dearly loved son, two devastated parents and a clinical team who are finding themselves caught up in an ethically distressing situation.

Here we are again.  The tabloid headlines screaming, twitter full of opinions and the only people who know the reality of the situation are the people at the centre of it all, around Archie's bedside; his parents, his doctors, his nurses.

So how did it get to this point? How did the final days of a child's life once again get played out in the public domain? An all too frequent and familiar scenario of  distraught parents, clinicians bound by patient confidentiality, lawyers, court appointed guardians and barristers? Court judgements and appeals?

I spent most of last year investigating cases like this. Looking at the ethical dilemmas that parents and clinicians caring for the most complex of children are confronted with day in day out.  In the majority of cases they don't hit the headlines, or even reach the courts but there are many times when trust and communication breaks down and parents disagree with the doctors treating their child.

Having been faced with the decision to end my own daughters life supportive treatment I wanted to understand why this breakdown in trust and collaboration happens, what leads to this point?

I interviewed many parents and clinicians, spent hours reading court transcripts and became a bit of an amateur medical bioethicist as I explored what it means when , just as in Archie's case, a parent is prepared to do "anything for their child".

I have learned so much, as I have sought to try and understand the impact and influences on parents struggling to make the most difficult of decisions for their child and as I watch the sad case of Archie Battersbee being played out in an all too familiar pattern it's obvious to me that something needs to change.   

So I thought I'd try and summarise them through my long neglected blog:

(These are my personal thoughts, not the the thoughts of any organisation I am associated with or work for but just stuff that I've learned and that, to me, makes sense):

1. The doctor/patient (or in this case parent) relationship has changed dramatically.

The pendulum has swung dramatically.  "Doctor knows best" was the mantra in my parent's time, where a paternalistic model, based on knowledge and advice that was unquestioned and sacrosanct, was the norm.  Now we live in a more autonomous world where, thanks to the internet,  parents feel empowered to challenge clinicians, presenting them with papers and information to back up their arguments.  I know this because I did it myself.  After all when your child has a super-rare genetic disease there is no way that a clinician is going to be up to speed with the latest gene therapy treatments or monitoring advice.  A parent however has so much more at stake.  I have spent hours of my life online research my daughter's condition to ensure that I knew everything possible about it to be able to support and advocate for her.

Parents are expected to be advocates.  We are no longer told what in the opinion of the clinician is best for our child, instead we are given options and then we are asked to make a decision.  Has the pendulum swung too far? Now doctors are asking parents to make decisions that no parent should ever have to make.  I can't ever remember a doctor telling me what to do for Daisy.  Rather I was presented with choices, try this medicine, attempt this surgery and then asked what I wanted to do for her.  That's a heavy burden to carry.  To make a decision  like that on behalf of your child. Have we, in moving away from a paternalistic model abandoned parents to their autonomy? Has the pendulum swung too far in how parents and clinicians engage?

Which brings me to the next big issue. When it comes to ending life supporting treatment are we asking parents to make an impossible choice?

2. Is "best interests" an appropriate approach?

In all of the cases I've researched and examined, just as in Archie Battersbee's case, the principle of "best interests" is always at the centre.  The best interest principle is enshrined in article three of the international convention of the rights of the child which states:

“In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.” (United Nations Convention on the Rights of the Child"

"Rights of the child" - that's the key phrase.  That's why in all these cases the child has their own legal representative in court.  So when a parent talks about their parental rights, it gets complicated, because how do we know that what the parent wants for the child is in the "best interests" of the child? When the convention on the Rights of the Child was being developed "best interests" was about  safety, health, wellbeing, family relationships, physical, psychological and emotional development, identity, freedom of expression, privacy and agency to form their own views and have them heard.  Science, medical breakthroughs, genomic profiling and so many other advances now mean that so much more can be done to support patients when previously they would have died. "Just because we can, does it mean we should?" is an ethical dilemma that clinicians struggle with every day.  Should this child be ventilated? Should this child be put through this major surgery? Should this child receive untested stem cell treatment? and so the list goes on....but what's in the best interests of the child? If we take this right back to the basic question, then we are asking parents to make a binary choice when it comes to disagreements around continuing life-sustaining treatment.  In other words by telling me that continuing life sustaining treatment is not in my child's best interests then the only other choice you are offering is death.

So the question then becomes does "best interests" offer parents a binary choice of life or death? and should that be a choice that we should  be even asking parents to make? It's rooted in emotion and combat.

Some ethicists are now beginning to question whether the "best interests" argument is relevant in this scenario.After all its binary and emotive - what parent wants to be the one who ultimately agrees to terminating their child's life.  That's a heavy burden to carry.  I should know, it's a decision I had to make.

3. How are we supporting parents who find themselves parachuted into this alien world?

Just like Archie's mum, I found myself having to navigate a very alien world after Daisy, my fourth child, was born. Overnight I went from a confident, senior director and experienced parent to feeling disempowered and trying to navigate a system for which I'd had no training or previous experience.

I've been thinking of Archie's mum. Suddenly finding herself in this alien world. Having to learn medical language and jargon. Knowing that she was having to advocate for her precious son, to be his voice, to make decisions on his behalf.

Think about it? How would you feel? The only analogy I can draw is that of a refugee finding themselves in a foreign land, surrounded by people they couldn't understand knowing they had to fight for their survival.  That's what it felt like when Daisy was born.  She needed me to be her voice. She needed me to make decisions for her that were in the realms of extreme parenting, that no parent should really ever have to make.

When Daisy was born I barely knew what the word phlebotomy meant by the time she died, 12 years later, I was running the equivalent of a high dependency unit in my home in order to support her medical needs.  How the hell had that happened and who was supporting me (especially given that my husband, her beloved daddy, had died of cancer a week before her 11th birthday)?

Who supports parents who are suddenly flung into this world, whether by gene mutation, premature birth. disease or catastrophic injury? Who helps us navigate this complex world of health and care? No wonder so many parents lean on the internet for support or find themselves vulnerable to people with their own agendas.

We don't have a robust system of independent advocacy in this country.  Parents are left to navigate their own course.  Chaplaincy services plug some of the gaps as do the PALs services. But it's piecemeal and unstructured.  Theres no-one to come to meetings, translate the medical jargon, to help parents understand what's happening. Is it any wonder they turn to the internet?

 And hopefully they find good advice and support but sadly there are far too many people who want to use vulnerable people to push their own agendas.

4. So when a disagreement occurs, what should we do?

What happens when a disagreement escalates into conflict? When clinicians and carers disagree and the only option appears to be resolution through the judicial process?

When couples separate they are encouraged to seek out mediation rather than automatically resorting to the courts.  Why is mediation not offered more regularly in hospital Trusts when relationships between clinicians and families break down?  Sarah Barclay co-founded The Medical Mediation Foundation following her time spent as a broadcast journalist reporting on a high profile case around the medical treatment of a child in the eighties.  She believes that conflict and breakdown of trust arises from a number of tipping points around communication. How is the role of the parent carer, their lived experience and input valued in discussions around a child's treatment and care? . I know I experienced some distinct positive and negative tipping points in how I interacted with the health professionals caring for my daughter and these shaped my relationship with the clinical team moving forward.

Would the offer of more widespread mediation services prevent disputes escalating into conflicts? Would they prevent cases reaching court? 

One thing I do know is that as long as both parties are open to engaging in mediation it's an opportunity to give it a shot, to get everyone around the table, on an equal footing to try and find a solution.

It's all down to communication. Like any relationship really.  Medicine is a people profession after all so why don't we spend more time training our medics to communicate?  And to recognise when a dispute may escalate into a conflict? Why don't we give our medical professionals better tools to be able to de-escalate this situations and a way to come to a resolution without going to court?

5. Ethics and the scientific conundrum

The mapping of the human genome, advances in data profiling and technological advances -  all of these things and more have meant that clinicians have so many more options available to them when it comes to treating patients.  And this means that there are more ethical dilemmas to be faced. "Just because we can, does it mean we should" is all too frequently becoming the dilemma faced by doctors in deciding what course of action to take for patients.

And in parallel we've seen the growth of the medical ethics discipline as a mechanism for clinicians to obtain advice and guidance on what course of action to take.

Over the pandemic ethics panels and committees in NHS trusts grew rapidly as clinicians were faced with having to make decisions around who should receive priority for the finite healthcare resources available.

Daisy was referred to ethics. Should she be put through a major surgery was the question being considered. I didn't know this at the time. Among parents the role of the hospital ethics panel is a bit of a mystery. Should I have been invited to present my viewpoint ? Or was this something just for clinicians to use as a sounding board for advice and guidance?

Medical ethics and the role played by clinical ethics panels in supporting clinicians is a rapidly evolving discipline, but is it fit for purpose? It has evolved in reaction to a changing clinical landscape but there's no firm overview on how ethics can support clinicians (and parents) in making difficult decisions and how there is inconsistency in how an ethical review of a case is carried out.

There's no doubt that in our changing world, ethical opinions are needed to support clinicians.One of the big outcomes of the the Charlie Gard case was the call for a more robust ethical review process for cases where there is a disagreement between what parents and clinicians think is best for a child.

So back to the Archie Battersbee case...

I remember how it felt, to be thrown into an alien world and then being asked to make decisions about my child.  I felt disempowered and frantically tried to work out how to navigate this complex system.  Because my child's life was at stake.

But I had time.  I had twelve years with Daisy.  Twelve years in which to hone and develop my skills.  For some parents, parents like Archie's, they have only a matter of weeks or months. They desperately reach out for support.  They're vulnerable . They are trying to do the right thing for their child. Their world has been turned upside down and they are living through the unimaginable.

Clinicians are trying to help them, drawing from whatever skills, experience and support they have.

it's an awful situation. Human beings trying to do the right thing, with a child at the centre.

We can do better. For everyone. For the parents, the child, the doctors, the nurses. There must be a better way than resorting to the courts, to social media, to conflict.

So  (in my opinion) the questions we as a society need to be asking are:

• How do we help parents, parachuted into this world, make sense of it all?
• How do we help clinicians and parents sit together and resolve conflicts?
• How can we do better for everyone involved?
• How can we do better for the child at the centre of it all?

It's just my opinion but we need to look at the tipping points.  What turns a disagreement into conflict.  How communication can make or break the parent/clinician relationship, how we support parents to make sense of this alien world, how we support clinicians.

How do we humanise the dialogue, it's not them and us, it's human beings trying to navigate a flawed process.  

Unless we go back to the basics, to communication and better emotional and practical support there will be more cases like Archies. Played out in the public domain. 

Tonight my thoughts are with Archie, his parents, his doctors, his nurses...all trying to do their best, all living through the unimaginable.

An update about my new book:

Earlier this year I announced that my third book, Anything for my child - parenting at the edge of medical science, was to be published by Oxford University Press.  I signed a contract with OUP to deliver my manuscript which was to be a narrative account of my life caring for Daisy, my fourth child, born with a rare genetic disease which would also explore the ethical dilemmas faced by parents like myself, interweaving stories of other families. I worked closely with my OUP project manager, regularly sharing work in progress and spent twelve months interviewing parents, siblings, clinicians, chaplains and mediators. I observed ethics panels and inquests and read countless court documents and academic papers in order to deliver my manuscript. Writing the book to me to places I had not gone to before and forced me to confront many difficult memories. I worked closely with ethicists, academics and beta readers to ensure that the book would be in the best possible shape to tell the most difficult of stories and take readers into a world that is all too real for so many families.

 Unfortunately when it was about to go into production OUP decided not to go ahead with the project.  They have worked closely with me however to find a home for it as they still believe in the book and the subject matter, they just don't believe they are the right publisher to do it justice.

Since this time I have had countless meetings with publishers and agents all of whom feel that it is an important piece of work but have varying reasons on why they will not take it on. I've heard that it's not commercial enough, that a book about children dying is a difficult sell, that it needs to be more upbeat and have more happy ending case studies and that my writing style is too colloquial.

It's been hugely disappointing, especially as so many people have asked me when it will be out. And even more importantly because many parents entrusted me with their stories, stories they had not told to anyone else.  They knew I would not let them down in opening up a window do our world.

And because of this I won't give up.  

Some subjects need to be discussed.  For those of us who live it, for those wonderful, brave parents who told me their stories, for Daisy, I wont stop. It's a hard read but it's life, this is what happens. We are all one catastrophic event, gene mutation or diagnosis away from our lives changing forever. I'm living proof of that.

It cant be sugar coated but we can try and understand and learn. And through learning change things for the better for the families who are just focused on doing anything for their child, even when anything means making the hardest decision you have to make as a parent.

( please get in touch via this blog if you want to know more about Anything for my child)