Phoenix Project
Raising money for interventions that support the
mental health
of familes and clinicians who are caring for children in hospital
Our Story
Bonnie and Nel were born healthy and happy on the 5th of May 2022. After 3 days falling in love with the girls in the maternity ward, we were home for a blissful day meeting Otis and our parents. Within 24 hours, a virus presented itself and Nel was freezing cold. We rushed to St Mary’s Paddington where they fought for their lives and despite the best care possible Bonnie died on the 14th of May.
Because the girls had been home we were in the Pediatric Intensive Care (PICU) not the Neonatal Intensive Care (NICU). We later found out this was a blessing for Nel, but an additional challenge for everyone else involved.
For the first 4 days we believed we’d lose them both. And yet we also believed they would both miraculously get better. We were so new to the traumatic environment it felt like anything was possible. The team fighting for Bonnie and Nel was like a world-class Formula One pit-stop crew. As the girls lapped the track, consultants strategised and their dedicated nurses would fill up the medicines pumping through their veins in the hope that they would get on top of the virus.
You can see this in the photos: ventilators, catheters, cannulas, antibiotics, blood transfusions, there was always something running. We were all running.
When Bonnie died our hearts broke.
Nel started to get better and we adapted to a kind of parenting we didn’t know how to give. Rather than breastfeeding, we had to learn about dummy dips and nasal gastric tube origami. We wanted to soothe her, but we could not sway, bounce, stroke, or hold her close. So we learned to read, sing, do hand hugs and lay hand-shaped bean bags gently against her back. Our teachers in all of this – the people who made the unbearable bearable, who replaced our natural instincts with what our daughter needed – were the nurses: kind, supportive, always there.
The hospital team became our village, grieving with us, supporting Nel with us, laughing with us and, so often, crying too. There are many small things that make a huge difference to the mental health of that village and, in-turn, give the child the best possible chance of a happy recovery.
Spirits were high on day 17 as Nel and her ventilator were lifted by 6 people for her first hug since being admitted - our amazing Physios call this Lift Off. How could it take 6 people and a laminated set of instructions to hug a baby? Tears of joy and anguish rolled down all of our faces.
Our real village made up of family and friends held the home fort and enveloped Otis in all the love, croissants and the hugs we all needed. Like ships in the night Ed and I would take it in turns to touch down at home, spending long enough with Otis that he’d fall asleep with one of us before heading back to the hospital.
Nel continued to get better. Leaving PICU was unexpectedly harder than we’d even been warned. Intensive care trains you into being a walking talking symptoms checker. The ticks and tells of someone who’s had to “come off” constantly watching their child's vital statistics on a monitor for weeks are brutal. The step down from intensive care to the ward is an acutely frightening time. Our PICU learnt coping mechanisms were adapted on the ward: reading stories aloud to cocoon your children from the beeping; carrying a note book at all times because ward rounds could happen at any moment; focusing on the part of recovery that you had control of; not keeping a spreadsheet of every blood glucose level (yes I did this, don’t do it); buying a multi plug adaptor so that your allotted socket can charge phones, iPods, white noise machines, lights and more; learning to say yes to every offer of a cup of tea in the knowledge you’ll share a restorative joke and probably learn something new.
Coming home was exquisite agony.
While we make meaning of Bonnie’s short life and Nel’s 3 months in hospital we are so grateful for the joy we feel. We live our lives with the gusto of all the colours of the rainbow, with this additional black streak but every other colour is even brighter than they were before. Nelly is 1 and couldn’t be more brimming with life. Otis is the most loving brother and their friendship radiates. We are home, the 4 of us, with a great big hole where Bonnie should be but we are together in many ways. We are lucky for all the love we have for each other and for and from our friends and family.
Fund Raising
Supporting St Mary's Paddington
We have learnt a huge amount about how to be good parents to a sick child, how to support the professionals to support us and how to look after each other and ourselves.
We hope that by combining our experience with that of many other families who are also learning, painful step by painful step, their own ways to cope we can make a difference.
With our fundraising we want to capture these stories and these coping mechanisms and transform them into resources that other families and practitioners can draw upon in the moment to support their mental health.
Imperial Health Charities have agreed to ring-fence the money we raise to dedicate to projects we agree with them will support the practitioners’ and families' mental health. Parent and practitioner forums will be set up to explore the unmet needs and brainstorm what could be provided to ease the agony of these key transitions. Your money will go directly to the initiatives we agree on in those groups. It could be that we fund welcome packs or silent mobile breast pumps, items for a parent's room, a library of resources, mentoring sessions or a wall of hope with stories from other parents.
We aim to focus on better understanding the experience of parents and practitioners looking after neonates on PICU as this is a particularly underserved area.
Time in hospital is inherently busy but fundamentally lonely. The need for guidance and resources was made even clearer for us as a result of the girls being admitted to the paediatric rather than the neonatal intensive care unit. Having been home they were not able to return to the purpose built neonatal ward. Being on the paediatric unit, which caters to children of all ages and to short term and long term stays, meant being somewhere where families and practitioners were facing a huge range of different critical situations. Conversely, no other family was going through the same challenges at the same time. This made the situation more isolating, and learning harder. It emphasised for us just how valuable it would be to have a body of experiences, resources and coping mechanisms built up over time from the many who spend time on the unit.
Our friends from St Mary’s would tell you how excited they are to explore tools for ensuring the very best mental health for themselves and everyone involved in the care of a baby. We all believe this is the beginning of something really special.
Starting small and having some local impact that could grow over the years.
Ed and I are so very grateful for your support in raising money for the people who kept us going and for other parents like us, who will have to keep going.