Stephanie and Daisy as a little girl. Photo / Instagram
Stephanie and Daisy as a little girl. Photo / Instagram
Warning: This article may contain details disturbing to some people.
“They should make a film about our lives,” I would often say to my children when they were younger. “Problem is, it’s so unimaginable that I doubt anyone would want to do it.” “But if they did,” I would add, optimistically, “I’d want Sharon Horgan to play me.” At which point the conversation would veer off at a hilarious tangent as we discussed who would play each member of our family.
Now in an art-imitating-life moment, it feels that my wish has almost come true. Watching Jack Thorne’s new BBC drama, Best Interests, has at times felt like being a fly-on-the-wall observer of my life (with the added bonus of Horgan as mother Nicci, whose husband, Andrew, in the show is played by Michael Sheen).
In the TV drama, the couple’s daughter, Marnie, is diagnosed with a rare genetic disease, which she is very unlikely to survive beyond childhood. Like Marnie, my daughter, Daisy Rose, was born with such a condition - and my husband, Andy, and I received the same dreadful news.
🖊 BBC drama Best Interests has many parallels with the story of our daughter Daisy Rose, and highlights the importance of palliative care
We welcomed Daisy into our lives on Dec 22, 2004. She was born prematurely and spent the first eight weeks of her life in the hospital’s neonatal unit. At the time, I was working as a marketing director and our other children were aged seven, five and two - we had thought our family was complete. Instead, that Christmas was the moment everything changed forever.
Daisy struggled to feed and absorb nutrients and the neonatal doctors became concerned that there was a lot more going on with her than just prematurity. Genetic testing confirmed that she had a rare disease called Costello syndrome.
The disease is caused by a random gene mutation, as opposed to anything she had inherited from us; we were told our odds of having a child with the syndrome were one in a million. It soon became clear that Daisy was at the extreme end of the disease and her doctors weren’t sure if she would even make her first birthday.
For me, there was no option. I gave up my career and became Daisy’s fulltime carer. I had really wanted to return to work; in hindsight, maybe Andy and I could have divided up the caring responsibilities so that I could have returned part-time. But, at the time, I felt that we were on a speeding train and Daisy needed all of my focus.
Best Interests characters Katie (played by Alison Oliver) with her poorly sister Marnie (played by Niamh Moriarty). Photo / BBC
So Best Interests, while a difficult watch at times, has captured the reality of life for families like mine so well. The way we adapt to a new normal - learning, as I did, the skills needed to keep our children safe and out of hospital. The way medical language trips off our tongues with ease as we begin to navigate a complex system in order to advocate for and support our child.
There’s one scene in the first episode which particularly resonated. Nicci comes home after spending the night at her daughter’s bedside on the intensive care ward. “I’m not stopping, I’ve just come back for a change of knickers,” she says to her older daughter, Kate, as she frantically rushes around the kitchen. The camera rests on the girl, who is left standing there, cereal bowl in hand, reeling.
Sharon Horgan and Michael Sheen star as agonised parents in BBC drama Best Interests. Photo / BBC
For me that was an incredibly powerful moment. There were so many times that I was so preoccupied with caring for Daisy that my ability to spend time with my other children was limited. I was pulled in multiple directions and while I know that in many ways it’s given them resilience, it was never the childhood that I’d imagined for them.
As the drama makes all too clear, everything seemed to be a battle merely to get the care and equipment my daughter needed or even just to join the dots between the various professionals involved in her care. I hated that this took me away from just being mum. “All of my children have one shot at childhood,” I told our social worker once, “and however long or short that childhood is, I don’t want to look back and regret time not spent with them as I was busy fighting for the support that Daisy needs.”
One way that my life differed from Best Interests, however, is in the support we received to prepare for the fact that Daisy was going to die before adulthood. When she was a few months old, we were referred to our local children’s hospice for support. With no family nearby, three young children and only one parent able to work, we were desperate for help and some respite from the unrelenting stress of juggling Daisy’s medical needs with just trying to be parents. Respite visits to the hospice allowed us much-needed breathing space from the constant care. It allowed our older children a chance to relax as well as meet other siblings who were in the same boat.
Daisy was born prematurely, but it became clear she had underlying health complications. Photo / Instagram
“I remember whenever we went to the hospice I didn’t have to explain anything to anyone,” my older daughter told me recently. “In fact, our family times there were some of the happiest memories from my childhood.”
The hospice support helped us focus on the quality, not quantity, of Daisy’s life. For Daisy, respite stays (which she called her sleepovers) allowed her to just be a little girl, not a patient or a medical diagnosis.
Daisy continued to defy the odds the doctors had first given her on diagnosis, but as she got older it was clear that her health was on a steady downward trajectory. She became wheelchair-dependent and developed intestinal failure, and then, when she was eight we were dealt the cruellest blow when she developed drug-resistant multi-focal epilepsy.
It was at that point that we were referred to the hospital’s palliative care service. Unlike Marnie in Best Interests, Daisy was not at a point where discussions were being made about whether or not to continue life-sustaining treatment. She was in unbearable pain, however, and the epilepsy had seemed to speed up her deterioration.
The referral was framed as “symptom management”. The first thing the palliative consultant did was to help us find a pain management protocol that we could organise at home. Beyond this, however, our early referral to palliative care, along with the hospice support, enabled us to engage in some very difficult conversations. We had accepted from day one that Daisy would die young, but working with our team we were able to talk about options and choices.
Daisy spent much of her young life having medical care and in hospices. Photo / Instagram
These conversations, while so difficult, were in many ways liberating. We were able to be very open about our worries and fears and make some sort of plan for Daisy’s end of life, knowing that it would be difficult to plan when or how it would come.
Daisy’s 12th birthday in 2016 was bittersweet, marking another year that she had defied the odds and outlived her prognosis, while it was clear that her health was deteriorating. In January 2017 she became ill and was admitted to intensive care and put on a ventilator.
We had been down that path many times before, and Daisy had always turned the corner, but this time felt different. She had a cardiac arrest and as I watched the team bring her back to life, I knew that it was her time. Daisy’s body was overwhelmed with sepsis and her organs were shutting down. The consultant told me that they could start dialysis, they could keep resuscitating her, but I knew that it was just delaying the inevitable and would cause her more suffering in the process.
I was faced with making a decision that no parent should ever have to make. And, devastatingly, I had to make it alone. Having been through so much together, Andy had died of bowel cancer just 12 months earlier. But before he died, Andy and I had been able to have some very difficult conversations about our wishes for Daisy with the palliative care team. I knew that Andy would have agreed with the decision I made.
So I asked the doctors to remove her breathing tube, saying it was her time to go.
'I was able to spend 12 wonderful years with my beautiful daughter Daisy Rose' says Stephanie. Photo / Instagram
In the end, I know that we gave Daisy a good death. And I know that this was very much thanks to the opportunity we had to talk about it and engage with the inevitable at an early stage. For me, palliative care was about living, not dying.
If I could change one thing about Best Interests it would be to use the opportunity to reframe the narrative around paediatric palliative care. If the family had had an earlier referral to palliative support, as we had for Daisy, would they have had the opportunity to discuss plans and wishes a lot earlier? But I guess that might not have made for such good drama.
Best Interests is a difficult watch, especially if you know nothing about the world of caring for a child who will die before you, but it’s brave and important because the reality is, sometimes children die. Medical science is incredible, the breakthroughs that have taken place over the past decades mean that more and more children are surviving, but sometimes families have to confront a stark choice: “Just because we can, does it mean we should?”
I was able to spend 12 wonderful years with my beautiful daughter Daisy Rose. Palliative care support helped me ensure that we focused on giving her the best quality of life, but also to know when it was time to fight against my instinct as a mother and to let her go.
