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| Imagine willing your child to die – that's what I did when my daughter got sepsis | Imagine willing your child to die – that's what I did when my daughter got sepsis |
| (14 days later) | |
| Until you’re in that moment, you can’t ever imagine willing your child to take their last breath. Yet five years ago, that’s what I had to do. It went against every parental and human instinct, but I held my daughter, told her I loved her and that she could die. Nyah was 21 months old and had previously been healthy, headstrong and full of life. When I was meant to be thinking about how to celebrate her second birthday, I was planning her funeral. | Until you’re in that moment, you can’t ever imagine willing your child to take their last breath. Yet five years ago, that’s what I had to do. It went against every parental and human instinct, but I held my daughter, told her I loved her and that she could die. Nyah was 21 months old and had previously been healthy, headstrong and full of life. When I was meant to be thinking about how to celebrate her second birthday, I was planning her funeral. |
| Sepsis led us to live every parent’s worst nightmare. At that time I’d never heard of sepsis. When Nyah had a rash and was unwell, we took her to A&E. They discharged her after a few hours and the message from the GP two days later seemed to be along the lines of “Calpol and cuddles”. Everyone said it was a viral infection and that she would get better. I had no idea she was so ill and it seems neither did the health professionals who saw her. The following morning she woke up in her cot at home and by the end of the day was on life support at the Royal Brompton hospital. | Sepsis led us to live every parent’s worst nightmare. At that time I’d never heard of sepsis. When Nyah had a rash and was unwell, we took her to A&E. They discharged her after a few hours and the message from the GP two days later seemed to be along the lines of “Calpol and cuddles”. Everyone said it was a viral infection and that she would get better. I had no idea she was so ill and it seems neither did the health professionals who saw her. The following morning she woke up in her cot at home and by the end of the day was on life support at the Royal Brompton hospital. |
| The paediatric intensive care staff worked so hard to give Nyah every chance. She survived six surgeries during her week in intensive care. We couldn’t have asked for more resources and effort to be put in to saving her. Her heart got stronger as her body fought off the infection but she had received CPR for 90 minutes before being put on the life support machine and her brain had been starved of oxygen. | The paediatric intensive care staff worked so hard to give Nyah every chance. She survived six surgeries during her week in intensive care. We couldn’t have asked for more resources and effort to be put in to saving her. Her heart got stronger as her body fought off the infection but she had received CPR for 90 minutes before being put on the life support machine and her brain had been starved of oxygen. |
| When to end a terminally ill child's life? It's an agonising decision | |
| Each day in hospital was a rollercoaster filled with hope and despair about whether she would survive and what kind of life she might have. I appreciated the staff’s honesty throughout. I recall one consultant talking in terms of the quality of life he would want for his own daughter. Every decision about turning off a child’s life support machine is unique. For us that decision was both the hardest and easiest one to make. We felt the quality of life available to Nyah was not what she would have wanted. Her brain was too damaged. She had been too full of life. | Each day in hospital was a rollercoaster filled with hope and despair about whether she would survive and what kind of life she might have. I appreciated the staff’s honesty throughout. I recall one consultant talking in terms of the quality of life he would want for his own daughter. Every decision about turning off a child’s life support machine is unique. For us that decision was both the hardest and easiest one to make. We felt the quality of life available to Nyah was not what she would have wanted. Her brain was too damaged. She had been too full of life. |
| When the day came to switch off the machines the staff were incredible. I can’t imagine a worse day in the office than starting a shift knowing you have to care for a child who will die that night. I will never forget the two nurses who gave us space, respect, hugs and tea. They helped me wash and dress her and change her nappy – as they had done all week. We could stay with Nyah for as long as we wanted after she had taken her last breath. No one rushed us. After a week of bleeping machines and medical interventions I could finally cuddle her. | When the day came to switch off the machines the staff were incredible. I can’t imagine a worse day in the office than starting a shift knowing you have to care for a child who will die that night. I will never forget the two nurses who gave us space, respect, hugs and tea. They helped me wash and dress her and change her nappy – as they had done all week. We could stay with Nyah for as long as we wanted after she had taken her last breath. No one rushed us. After a week of bleeping machines and medical interventions I could finally cuddle her. |
| I have worked as a clinical psychologist in the NHS for over 15 years. I also train clinical psychologists and believe in our healthcare system. I don’t find it the easiest place to work and increasingly think about leaving, especially in the climate of pay freezes, limited resources and being overworked. I imagine that the staff who cared for Nyah faced similar circumstances. | I have worked as a clinical psychologist in the NHS for over 15 years. I also train clinical psychologists and believe in our healthcare system. I don’t find it the easiest place to work and increasingly think about leaving, especially in the climate of pay freezes, limited resources and being overworked. I imagine that the staff who cared for Nyah faced similar circumstances. |
| It was our agonising job as Charlie Gard's care team to say: enough | Anonymous | |
| I will probably always be frustrated that the bacterial infection that led to sepsis was missed more than once. Perhaps earlier detection would have changed the outcome? That is a question no one can answer. I am hopeful that parents and professionals seem to be increasingly aware of sepsis. This might result in a reduction in sepsis deaths from the current 44,000 a year. | I will probably always be frustrated that the bacterial infection that led to sepsis was missed more than once. Perhaps earlier detection would have changed the outcome? That is a question no one can answer. I am hopeful that parents and professionals seem to be increasingly aware of sepsis. This might result in a reduction in sepsis deaths from the current 44,000 a year. |
| For me, the richness of the NHS comes from those individuals who go above and beyond what might be expected of them: those for whom it isn’t just a job. I’m grateful for the medical expertise we encountered that week but, more than anything, I’m grateful for the humanity of the staff who genuinely seemed to care. | For me, the richness of the NHS comes from those individuals who go above and beyond what might be expected of them: those for whom it isn’t just a job. I’m grateful for the medical expertise we encountered that week but, more than anything, I’m grateful for the humanity of the staff who genuinely seemed to care. |
| If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com | If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com |
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