Nieve’s story: “At the end of her life we were alone”
Nieve was born in July of 2007, a happy and content baby, but it quickly became apparent in weeks that things weren’t right: “Nieve didn’t hit normal milestones like other babies and toddlers. She didn’t develop the usual skills or hit the normal milestones. When she was about four, she started to experience seizures.”
When Nieve was only a couple of months ol,d she was referred by her local paediatrician to the hospital for what resulted in a five-year journey of investigations. Visiting multiple hospitals and undergoing many difficult tests, Nieve was eventually diagnosed with Rett Syndrome at around age five.
Becoming advocates for a happy soul
Nieve required around-the-clock care at home. From moving to feeding, her mum and dad cared for her 24/7 throughout her short life.
Nieve had frequent admissions to hospital due to illness and her family had to quickly become experts in having to administer life-saving interventions daily. As time went on, they slowly adjusted to their new life and became fluent in the medical world.
We unknowingly became strong advocates, not just for Nieve but for our friends who faced similar challenges to us. We developed our skills in our nursing interventions which prevented many hospital admissions and we fought many battles to allow us to care for Nieve at home comfortably and have an education which was meaningful and fulfilling for her.
Kristine, Nieve's mum
Nieve was a happy soul with a magnetic personality: “People were drawn to interact with her and despite her inability to communicate, her smile, facial expressions, and sounds told us everything we needed to know about how Nieve was feeling and what she wanted at that precise moment. Those who were able to reach into Nieve’s world were rewarded with secret smiles, understanding and an ability to communicate without words.”
Planning the final precious months together
As time progressed, Nieve’s health slowly changed. She needed more medications, more treatments and underwent major spinal surgery to correct her debilitating spinal scoliosis.
In March 2024, Nieve was admitted to hospital with acute kidney injury. After several weeks, she was discharged. Unfortunately, Nieve declined in the coming weeks. She was under the care of her local children’s palliative care team, who kept in touch with Kristine.
At her last outpatients appointment with their renal team in April 2024, Nieve’s parents were told that Nieve was unlikely to improve from her kidney failure: “We were told that Nieve was in the last few months of her life.”
That night, Kristine and her husband Daniel planned out how they would spend the final months with Nieve, taking time off work and making precious memories with Nieve and her 11-year-old sister Josie.
However, a few days later, Nieve’s condition changed: “She suddenly seemed quiet, less reactive, cool and noticeably more tired. I knew in my heart that she was dying. I was aware that the local palliative care team provided on-call cover over the weekend, 9-5pm, and so I contacted the team. They came out to see us and sadly confirmed our feelings about what was going on.”
The team immediately began arranging anticipatory medications, although without having direct access to medications, this had to be done via the 111 service: “Both the consultant and ourselves felt frustrated at the arduous process whilst we sat with our daughter who was slowly dying.”
The team returned in the week, and the family discussed where they wanted Nieve to be during her final days and hours and what support they needed.
We felt strongly that Nieve should remain at home with her family around her to care for her. Nieve loved home, she was at her most relaxed and content when she was at home and we felt that it was only right that she was allowed the chance to die in her own familiar surrounding with smells, sounds and her family around her.
Kristine and Daniel were provided with medication and a clear written plan on how to administer medications when the time came: “Neither us or the team anticipated Nieve’s rate of decline and on Tuesday evening at 7pm, we knew that Nieve had only hours left.”
“We sat with Nieve, administered the medications as per the plan, trying desperately to gauge whether she had enough pain relief, at what point to give her anti-sickness medications and whether she needed medications for seizure activity or agitation.
I can’t describe the pressure and stress we felt at this time. Alone as parents with a dying child, trying to make clinical decisions and do the right thing whilst facing the reality of our own daughters’ death and wanting desperately ‘just to be with her’ without having to judge, draw up and administer medications. I still hold deep regret and sadness that I had to sacrifice precious moments holding Nieve’s hand whilst I was taken away making phone calls to services pleading for help.
Alone at the end
After 60 minutes and feeling increasingly anxious and worried, Kristine rang 999 and pleaded for help to ask if a medical professional could come out and review Nieve. 15 minutes later, they received a call from the doctor who asked what they wanted them to do: “I explained the concerns we had and asked if they would call out to review Nieve to see if she required any further medications. The doctor agreed to come. At 1.55am the doctor arrived, at which point Nieve was in her final moments and we asked him to leave.”
Nieve took her last breath at 2am.
“The days following Nieve’s death were spent talking, reflecting and trying to stop the tormenting thoughts of ‘did we do enough for her during her final hours? Did we do it right?”
Campaigning for change
Kristine, determined that another family should never be placed in that situation, made it her priority to highlight their situation to the hospital leaders and commissioners of their local NHS services. Over the last six months, she has been working with her local Integrated Care Board (ICB), which is responsible for planning and funding children’s palliative care in the region, to find ways to improve the children’s palliative care services. And in March, the local ICB announced it had funding for a 24/7 children’s end of life care at home service, which will allow the region to begin developing it in the future.
Sadly, Kristine isn’t alone. She is one of many parents facing the devastating consequences of little-to-no 24/7 end of life care at home for seriously ill children, simply because of where they live.
A seriously ill child’s final moments should never depend on a postcode. Help us demand change for families like Nieve’s by signing our open letter to the Prime Minister.
