Infection Prevention Week
Each year we host an Infection Prevention Week during October to show how we can all work together to keep babies safe from infection. We want to empower parents and carers to set boundaries.
Tell us about your family
I live with my husband Craig, our daughter Isabelle and our Labrador in the very south of Cornwall. We love walking, the beach and our quiet rural life. I’m a secondary school English teacher and Craig works as a greenkeeper.
Ezrah was our first baby, born in 2022. He was just 19 days old when he died from a sudden infection. Since then, we’ve gone on to have Isabelle who is now a busy three-year-old.
What infection did Ezrah contract?
Ezrah died from an infection, Group B Strep, and we didn’t know the signs of infection in babies. On the day he became unwell, I thought he had a cold or even Covid. I’ve since learned that Group B Strep infection can develop in babies up to the age of three months of age and is the leading cause of meningitis in newborns. In Ezrah’s case, his Group B Strep infection also became sepsis and meningitis.
A few things happened that morning, but I was looking at these signs or symptoms in isolation. Ezrah fed really well the day and night before he became unwell, so when he wouldn’t feed well in the morning, I wasn’t alarmed. In the early afternoon there was a period of crying that was higher pitched than any other cry he’d made before, but he settled after skin-to-skin.
Ezrah hadn’t had a dirty nappy that day, and I’d messaged a couple of family or friends and we all felt that he’d feel better once he did have a dirty nappy. I really felt I was overreacting and being dramatic. In the evening, I took his temperature, and it read higher than it had 30 minutes before – this was when we called 111.
The 111 operator asked if Ezrah was grunting when breathing. I asked them to explain what this means as he didn’t sound like he was grunting, but he was wheezing.
When did you get to hospital?
Our call to 111 came at the height of the ambulance crisis, so we waited for an ambulance but eventually drove to hospital ourselves and arrived at 10:30pm. They saw immediately how sick Ezrah was and rushed him straight to resus. Suddenly there were so many staff surrounding him, working on him. We were taken to the side and told to prepare for the worst, as he was showing signs of sepsis. Group B Strep was mentioned as a possible cause of Ezrah’s infection at this point and this was later confirmed.
Ezrah was transferred to a specialist children’s hospital, but eventually we were told he had suffered widespread brain damage due to meningitis; we were told Ezrah’s brain damage was unsurvivable. We held him as we said goodbye.
Why is raising awareness of the symptoms of infection so important to you?
We had tried to do everything right in preparing for Ezrah’s arrival. I’d read all the books in pregnancy, attended classes, but nothing gave me the knowledge I needed that day. I only discovered The Lullaby Trust’s Baby Check app after Ezrah died. When I tried it retrospectively with Ezrah’s symptoms, the result was immediate: “Go to hospital, call 999.” I wish I’d known it existed then, which is why I want to speak out. Knowledge is power and being told more about infection upon discharge from hospital, or the midwife telling us about the Baby Check app during pregnancy, could’ve saved Ezrah’s life.
Information on Group B Strep (GBS) should be shared with expectant mothers. The UK does not currently screen for GBS but parents can choose to pay around £40 to do this via a home swab kit and, if positive, antibiotics will be given during labour to protect the baby from early onset GBS. There is no prevention for late onset infection (categorised as day 7 of age to day 90 of age) and so knowledge of the signs and symptoms of infection are crucial; these should be shared with parents of newborns at discharge. The information given should name sepsis and highlight clear signs of infection and what to do if you are concerned that your baby may be unwell. Timely treatment is crucial when it comes to infections in babies as they have extremely limited immunity at birth.
I passionately believe parents deserve to have helpful information shared with them on infection and this is why I was so pleased to see The Lullaby Trust launching an infection prevention campaign. The charity has such a huge reach and though I couldn’t have stopped Ezrah becoming unwell, if I’d have known what I know now, I could’ve reacted quicker and that might have made a difference.
How did your experience with Ezrah change your experience with Isabelle?
When Isabelle was born, we limited visitors and made sure people didn’t hold or handle her unnecessarily. I felt strongly that I had to protect her from infection. For the few people who did hold her, we insisted on thorough hand washing. When we left the house, I always had her in a carrier rather than a pram, as it meant I could protect her more. She was against my body and I could turn away from strangers trying to touch her.
I think it should be the norm that parents of newborns and their wider families discuss boundaries around how the baby may or may not be handled. Parents should be encouraged to share what they are comfortable with and the priority should be the baby’s wellbeing rather than the feeling of pressure to hand them around to please others.
We have built Ezrah’s Legacy, and raised over £100,000 in his name for various charities, keeping his memory alive and supporting other bereaved families. Our dedicated Instagram page documents our fundraising.
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What is your message for families who are expecting a baby soon?
Newborn babies are so vulnerable to infection. I know how much families want to hold, touch or kiss a newborn in the family. But if you really want to show your love and support, you can support parents more by making freezer meals or running errands. The wellbeing of the baby must be the first priority and everyone should be understanding of this.
Sarah -
You can show your love and support by respecting the infection prevention boundaries and measures that families put into place for their baby, for as long as they wish.
Sarah
Discover more
Katie’s story
Katie's son, Jenson, died suddenly and unexpectedly in 2021 at nine weeks old. Katie spoke to us about her experience, and her subsequent fundraising for The Lullaby Trust.
Baby Check app
Our Baby Check app gives you peace of mind, in your pocket. If your baby is under six months of age, you can use the Baby Check app to find out if they need to see a health professional.
Preventing infection
Babies are more vulnerable to infections than older children, especially in their first few weeks. Here you will find the signs and symptoms to look out for that your baby might be unwell.
You can support people like Sarah and Craig
Donate today and your kindness will empower families with trusted and life-saving baby safety advice, as well as providing a supportive space for anyone who has experienced the the sudden or unexpected death of a baby or infant.