‘She’s critically ill Ma,’ my son Robert sobbed down the phone. ‘She just died for five minutes on the table and they had to resuscitate her.’
He was in hospital with my beloved granddaughter Stella-Lily, who was dangerously ill. My blood ran cold at the despair in my son’s voice.
Within hours, she was diagnosed with sepsis – five days later, she was dead.
Stella-Lily’s parents had taken her to hospital three times before she was admitted – being sent home twice.
In the months after her death, Robert never stopped blaming himself.
A year later, he took his own life.
They should both still be here. Instead, this Christmas we had two empty places at the table during our annual family Boxing Day dinner. On the 25th itself, I spent some time alone at home, honouring them in my own way, before going to my daughter’s for a quiet dinner.
Robert was separated from Stella-Lily’s mummy but they had joint custody. During Robert’s weeks, I helped out too.
Stella-Lily loved her Saturday sleepovers with me – I let her stay up past bedtime, dress up in her favourite princess dress and perform Taylor Swift’s Shake It Off in my front room.
By November, she was already looking forward to Christmas.
She’d spent the previous December in Canada with relatives on her mummy’s side. But I’d kept my tree up into January, waiting for her. Christmas 2022 was my turn to host, I couldn’t wait.
But in late November, Robert called me to say he was in A&E.
I went to join him, but soon after I arrived, Robert came out looking relieved, with Stella-Lily at his side.
‘They said it’s just a virus,’ he smiled.
I was so thankful.
About sepsis
- According to the UK Sepsis Trust, there are at least 245,000 cases of sepsis in the UK every year.
- Up to 48,000 people are estimated to die in the UK every year due to sepsis, and another 80,000 people suffer life-changing after-effects like disability or amputation.
- Sepsis kills more people than breast, bowel and prostate cancer combined.
- It’s estimated that around 2,000 children each year develop sepsis in the UK.
The next day, Stella-Lily’s mummy took her back to A&E. Robert met her there. They were worried she was still sick and really lethargic.
This time, the doctors decided Stella-Lily had a tummy bug. She was given Dioralyte, an oral rehydration.
The following evening Robert frantically called me.
Stella-Lily’s parents had taken her to hospital for the third time – she was admitted to paediatric intensive care.
I rushed to the hospital with my daughter. It felt like we’d entered hell.
We were told that Stella-Lily had Strep A, which developed into sepsis. Her kidneys failed so she was put on dialysis and her limbs started turning black.
At one point, amputation was discussed. I remember thinking that she would cope with losing a foot – if only we could save her life.
The intensive care medical team was brilliant but the sepsis had taken hold.
Two days later – just a week after she’d started complaining of feeling unwell – we were informed that Stella-Lily had no brain activity.
And on Sunday December 4th, another scan confirmed that her brain had shut down.
Stella-Lily passed away on Monday December 5th, just three weeks before Christmas and her sixth birthday on December 28th.
We dressed her in her Rapunzel dress and she was laid to rest in a tiny coffin covered in rainbows.
Christmas was cancelled and on Stella-Lily’s birthday, we released balloons into the sky.
My heart was breaking – but Robert’s was shattered. I had to stay strong for my son. He spiralled completely after her death, spending nights in my spare room watching videos of her.
Of course, he blamed himself. We’d never heard of sepsis, but he kept saying he should have done more to get the doctors to listen to him.
The red flag symptoms of sepsis
The UK Sepsis Trust says that these are the symptoms to look out for in adults. Seek urgent medical attention if you’re worried and ask: Could This Be Sepsis?
S: Slurring speech or confusion
E: Extreme shivering or muscle pain
P: Passing no urine (in a day)
S: Severe breathlessness
I: It can feel like you’re going to die
S: Skin mottled or discoloured
The charity also has advice for sepsis in children. Be aware if a child or infant is breathing very fast, having a convulsion, has a rash that doesn’t fade when you press it, has mottled, bluish or pale skin, feels abnormally cold to touch or is difficult to wake.
I kept reassuring him, but over the next year, Robert was hospitalised several times after overdosing on alcohol and medications.
I was desperately worried. He’d never had mental health problems previously, but grief was destroying him.
As Christmas approached again, Robert appeared to be turning a corner. He told me we would have a good Christmas this year.
I wanted to believe him and did everything I could to make it special, hanging the decorations and inviting the whole family for Christmas dinner. He went out for a drink with his cousins and uncle, but made sure they were back at my house for 2.10pm, when they knew the turkey would be on the table.
On Boxing Day, Robert played games with his nieces and nephews. It gave me hope.
A couple of weeks later was Robert’s birthday, so I had invited him over for dinner – just me and him.
But the same afternoon my niece called me, as soon as I heard her voice, I knew Robert had gone.
She’d let herself into his house and immediately found notes he’d left for his nieces and nephews, with gifts and bits of jewellery. She knew before even finding his body what had happened.
Samaritans are here to listen, day or night, 365 days a year. You can call them for free on 116 123, email [email protected] or visit samaritans.org for more information.
My Robert had taken his own life. I believe he died of a broken heart.
In a video message on his phone to me, he said: ‘I always thought Stella-Lily needed me – but now I know that I need her.’ He also left messages for other members of the family, telling them ‘look after my ma, because she’s the one who will be crying the hardest’.
After his death, Belfast Health and Social Care Trust commissioned an independent review into Stella-Lily’s care, and highlighted lessons to be learned around recognising sepsis. During the process, the reviewers met with me and I was glad to be involved.
I submitted a letter as part of the review, asking for four basic tests to be carried out on poorly children in A&E – temperature, swabs, urine testing and blood tests. This was included in the final report.
The report made for grim reading. At one point, on her second A&E visit, a doctor asked for a cannula to be inserted into her arm for a blood test, but it never happened. Nor had her urine been tested.
The report acknowledged that this test ‘would probably’ have revealed abnormal results, and IV antibiotics at this stage may have ‘led to a different outcome’.
It was sickening. But I was hopeful that lessons would be learned so it never happens to another child.
If I can help just one other family to spot the signs of sepsis, Stella-Lily’s death won’t have been in vain.
Martha’s Law gives hospital patients and their families the right to request an urgent review if they feel a patient’s condition is deteriorating and their concerns aren’t being addressed.
I urge people to ask themselves if something feels wrong. It could very well save a life. And parents know their children better than anyone else.
As told to Jade Beecroft.
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