Laura Weaver’s baby daughter, Alice Mai Rose Byrne, was born on the 31st of July 2023.
The first her parents heard of a diagnosis of sepsis was via Alice’s post-mortem report in February 2024. She died just days before Christmas 2023, aged just less than five months.
Less than a year on from this unimaginable tragedy, Laura has very kindly agreed to share her story of what happened, in the hope of raising better awareness of sepsis. She explains how events unfolded here.
I first took Alice to our GP on the 14th of December 2023 with a terrible barking cough. I was advised that it was rhinovirus [the virus responsible for the common cold] and was told that if she was wheezing, and/or sucking in her ribs or throat, to take her to A&E. The GP said that her chest was clear though and that the infection was all in her throat.
Three days later, on 17th December, Alice was no better so I took her to Southampton children’s A&E. In the three hours we were there, we saw the junior doctor twice for five minutes each time, and a nurse once to take Alice’s obs. The junior doctor listened to her chest. They put a SATs monitor on her toe, and she was then diagnosed with RSV (Respiratory syncytial virus) bronchiolitis. There were no checks or tests and no bloods were taken at this stage. Nothing was explained to us. We were given a leaflet with red, amber and green symptoms to look out for and were then discharged. Before we left the junior doctor said that the fact that Alice’s chest and throat were sucking in was absolutely fine and that we shouldn’t worry, they went on to say that day four to five would likely be the worst, but that they were confident that by day seven she would be absolutely fine.
Three days later, on the 20th December, I phoned the GP for some advice as Alice was still very poorly and presenting differently. She had pain around her ribs when she was being picked up and her knees were going up to her chest. The receptionist gave me advice from the duty doctor about constipation and weaning and said that if she was not better by the next day to phone back and they would put her on a triage list to see a doctor. I phoned again on the morning of Thursday 21st and was put on the list. I got a call at 2pm for an appointment at 4.10pm. By the time she was in the doctor’s room she was unresponsive.
She rapidly went into septic shock but at the time no one picked up on it and it was seen as a cardiac arrest. She was given CPR and oxygen and a number of different drugs to get a rhythm in her heart. She was then taken to another – non paediatric – hospital.
Alice died in hospital on 21st of December, 2023 at 6:07pm.
It wasn’t until we had her test results back that we discovered that Alice’s cause of death was an invasive Group A streptococcal infection, which had caused her to develop sepsis. Her postmortem also told us that she had had bronchopneumonia.
When we received the post-mortem report we were shocked, upset and angry. Alice hadn’t received any treatment for sepsis.
One of the key things I remember of Alice is her smile – it could light up a room. I want other parents to know that a baby having a cold can turn into RSV, Bronchopneumonia, group A strep and sepsis.
And a mother’s instinct is key. It is rarely if ever wrong. If you’re not happy about something, speak up. I was Alice‘s voice. I spoke up but tragically Alice didn’t receive the care and treatment in hospital that she needed. Her symptoms and the way she was presenting were not treated in the way that they needed to be.
I am now really keen to raise awareness of infectious diseases in babies and to fundraise. I have an Alice in Wonderland themed car for car shows to fundraise in memory of Alice for other families who have lost a baby. I make crafting pots and stationery pots to sell, I do raffles and tombolas and charity fundraising to give back to the charities who have helped Alice and my family.
I make leaflet books and picture books and try to talk to as many people as I can to raise awareness. I also have a Facebook group to connect with other families.
Charity Comment: Laura’s tragic story of losing Alice to sepsis highlights the potentially tragic consequences of unrecognised sepsis symptoms in infants. Sepsis is widely acknowledged to be one of the most difficult conditions to diagnose, for many reasons. Key amongst these is that the ‘window’ between the symptoms of a routine infection being visible and the infection developing into sepsis can be very narrow. Clinicians may well not see a patient at the point where that transition has occurred. It is vital therefore that patients and those looking after them are always confident to re-present to clinicians if they continue to have concerns, and to voice their concern that what they are seeing may be sepsis.
Laura rightly wants to raise awareness of the importance of trusting parental instincts when dealing with infant illness. Her goal now is to prevent future similar tragedies by educating parents and advocating for better healthcare practices in the future, to improve outcomes for patients and their families.
We send our deepest condolences to Laura and her family and our thanks for their kindness in sharing Alice’s story in this way.