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 wearing minnie mouse ears and a princess anna dress holding looking out to the show from the disabled access area at the O2 arena in greenwich
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.