Nova’s story

Holly Justice lost her daughter Nova to sepsis aged just 11 months, and now she’s on a mission to make sure that other parents know just how quickly sepsis can strike. 

Nova was a happy, healthy baby, just beginning to explore the world aged 11 months. In September 2023, Nova’s older brother Jaz had just started school, and her mum, Holly, was preparing to return to work from maternity leave. Nova had started settling in sessions at nursery, and everything seemed normal. 

On a Wednesday evening, Nova went to bed as normal. She woke around 11pm, which wasn’t unusual, as she had never been the best sleeper. Holly picked her up and started feeding her, but something was off – Nova’s body was shaking, something that had never happened before. Holly showed her husband, Dickon, concerned. Although Nova wasn’t distressed and was making eye contact, her whole body trembled. Unsure if it was a febrile seizure, they called 111, who triaged them and escalated the call to 999.

Nova didn’t have a temperature, and she seemed alert, so when the ambulance was delayed, Holly decided to drive her to the hospital herself. At A&E, Nova was triaged and seen by a doctor. Holly explained: “They checked her temperature, looked in her ears and her throat, and said, ‘We’re not really sure what that was about, but we’d like to rule out a water infection.’” Holly described how difficult it was to get a urine sample from Nova, but during that time, things changed suddenly. “Her temperature spiked to over 40 degrees, and her breathing started to get a lot more rapid. We were quickly moved into resus.”

Nova was given oxygen and intravenous antibiotics, and Holly recalled, “She started responding really well to both of those things. She was a lot more alert, her breathing speed reduced, and she was just calm and relaxed.” 

However, after feeding her, Holly noticed a change: “I put her down on the bed, and at that point, we noticed on her bottom she started to have a rash. She also just started rolling around a bit, like she was struggling to keep consciousness.”

From there, Nova’s condition deteriorated rapidly. Holly said, “That was about 6:30am, and from there she just deteriorated in minutes.” Dickon arrived just in time to see Nova before she was intubated. “Luckily, my husband got to the hospital just before Nova was put to sleep, so that he and she knew that her dad was there. They had a little moment together.” Despite the medical team’s efforts, though, they were unable to stabilise Nova for transport to Bristol, and she passed away at 12:30pm that afternoon.

“The speed at which she deteriorated from being a healthy, fully happy normal child going to bed at 7 o’clock in the evening, to then being gone the following lunchtime, is still a really hard thing to comprehend,” Holly said. It was later confirmed that Nova had sepsis, caused by a strep pneumonae infection. “It was a strain that’s not covered [by vaccinations], and we will never really know why that infection led to such an overwhelming sepsis response in Nova’s body.”

“When they intubated her, we left the room because they said it was kind of an invasive thing that we might not have wanted to watch,” Holly explained. “The consultant sat with us and said, ‘We’re giving her everything we possibly could, and she’s not able to respond.’” Holly recalled collapsing onto the floor when she realised Nova wasn’t going to recover. Holly said: “It’s just really hard to comprehend. A few hours earlier, I thought we were going to be sent home with some Calpol and told to keep an eye on her.”

In Nova’s final moments, Holly and her husband were called back into the room as doctors performed CPR. “We were kind of in desperate times, pleading, shouting, doing everything we could. She heard our voices, and she responded to the CPR – they found a heartbeat, and she tried, really tried, to rally through. That happened two or three times.” Holly explained that, despite Nova’s brief response to the CPR, “nothing positive really was going to come out of where we were at that point,” with Holly conscious of the quality of life Nova would have if she survived, her brain having been starved of oxygen for so long at that point. 

Holly described how losing Nova has brought her and her husband closer together: “I guess I just thought, no marriage will survive this. But actually, it’s the opposite. This huge thing only happened to the two of us…we were both present that day, and it’s meant that he knows me more than I ever thought he would. We do counselling together, we see a psychotherapist together, and we also see a grief coach together, which has been really impactful.”

One of Holly and her husband’s biggest concerns was how to tell Jaz about Nova’s death. They wanted him to be a part of the process. “We were very aware that we needed to be there for him,” Holly explained. “We brought him back to the hospital and told him in the car. We wanted him to understand as much as we could explain, so we read Nova a story together, took hand and foot casts, and let him say goodbye.” 

Jaz’s grief has been challenging to manage, as resources for younger children are limited. Holly explained, “There are a lot of charities for older children, but it’s difficult to know how to respond to his questions or behaviour. He still struggles to understand where she is.” The family has tried to help Jaz process his grief by involving him in rituals, such as visiting Nova’s grave and talking about how her spirit is now a star. Holly said: “It’s really hard for him to understand, and emotionally, we’re still trying to figure out the best way to support him.”

Nova’s family have found ways to keep her memory alive. “Nova loved food, and her favourite foods were strawberries and tomatoes,” Holly shared. “This summer, we’ve been growing our own strawberries and tomatoes, and it’s been a really positive thing for us to do together. When the first strawberries were ready, Jaz suggested we take some to Nova’s grave and leave one for her.”

Holly’s colleagues have also helped to honour Nova’s memory by organising a 5 million-step challenge, raising £3,000 for the UK Sepsis Trust. “It was a really lovely way to keep her memory alive and for people to know that she mattered,” Holly said.

In the months following Nova’s death, Holly has found support from the UK Sepsis Trust to be invaluable in her grief journey. “I feel really lonely. I think that’s something I’ve felt a lot over the last few months and weeks. You realise you’re never going to be the same as other people.” Holly added, “I’ve got fantastic friends and family, but nobody I really know in my close network has lost a child. You’re forever different from everyone else.”

Holly shared: “Katie, in particular, has been amazing. She helped me get my head around what sepsis is, how it affects the body, and how it could happen so quickly. Her experience and knowledge were just incredible, and she explained it in a way that made sense to me more so than any other medical professional.”

“Katie was someone I could say the things I was feeling to without any judgment,” Holly said. “I could express the things that felt really ugly or wrong, and she’d respond, ‘That’s totally normal, I hear this a lot.’ Knowing that other people had experienced this has been really helpful.”

In addition to the one-on-one calls, Holly has also found comfort in the UK Sepsis Trust’s bereavement group. She said: “Just engaging and seeing other people’s stories helps, because like I said, I do feel really lonely in this. So seeing how others are processing their loss has been really helpful.”

One of the most challenging aspects of grief for Holly has been the guilt that comes with trying to live life without Nova. “There are times when I catch myself laughing or smiling, or enjoying something Jaz has done at school, and the guilt is huge. Motherhood guilt is common anyway, but this is something else,” she said. Holly elaborated: “I know that living is a privilege – Nova would have loved to grow older, but it’s hard to really live life to the full when I feel like I shouldn’t because my daughter’s died.”

One of Holly’s main goals now in the wake of Nova’s death is to raise awareness of sepsis. “Most people I speak to don’t know much about sepsis,” she explained. “I want as many people to know that sepsis isn’t just about an infection of a cut, and it doesn’t always present with a rash. It can be terrifyingly fast.” 

Dickon recently took on a sponsored bike ride in Nova’s memory, which he hopes to make an annual tradition to continue raising funds for UKST and awareness of sepsis.  

Holly encourages other parents to trust their instincts and seek medical help if something seems off. She said: “If you’re ever unsure, don’t wait around. You’ll never be a bother, especially with young children.” Holly emphasised the importance of asking medical professionals about sepsis: “If you ever have any concerns, just ask them, ‘Could it be sepsis?’” 

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