This 13th September is World Sepsis Day, and in honour of this day we spoke with Beth Deacon- Bates, from Instagram @the.baking.mum, on how Sepsis has affected her and her family, with the hope to raise awareness of this condition.
Please can you explain what Sepsis is and how this has affected you and your family?
Sepsis is basically an infection, it’s where it get’s to the dangerous levels, it’s where an infection has been allowed to run riot. It’s been kept on top of and it’s got a very high mortality rate especially if your body goes in sepsis shock, which is happened to our little boy, Roy. He was born prematurely by emergency C-section and unfortunately the doctors didn’t spot he had an infection quick enough so they weren’t able to treat it and it developed into sepsis and then sepsis shock is what eventually took hold of his organs and there wasn’t really any coming back from that.
Sepsis can affect anybody at any time, but we know it tends to strike ether the very old or the very young. In your experience, what causes Sepsis in young or premature babies?
It’s because they’re so vulnerable. Any sort of infection can take hold of them so quickly and unfortunately babies don’t always present obvious symptoms with infection. Someone’s who’s healthy might obviously deteriorate whereas a baby can harbour those infections and not present symptoms outside very obviously, it can be harder to spot. The usual temperatures and becoming sleepy and unresponsive, it’s those symptoms that you don’t always recognise because it’s quite normal for babies to have those. If a new-born baby has just been born, it’s going to be sleepy so you wouldn’t necessarily think sepsis or infection straight away, and that’s what happened with Roy, especially because he was so early. He picked up an infection, they’re not too sure how and we’ve been given a few ideas of what it could have been; it could have been I was harbouring that infection, it could have been that when he was born via C-Section he swallowed something, something got inside him that way, or when they tried to ventilate him they introduced an infection then as well. It’s a bit of an unknown unfortunately and that is why Sepsis is so scary.
So you didn’t necessarily know when Roy was experiencing those first symptoms because they were so alike what a baby would be doing at that age?
Yes exactly. So when we was told he was born, we were told “he’s fine he’s thriving, he’s doing very well, he’s doing everything we expect a baby to be doing”, and then quite quickly that turned around, within 24 hours of him being born to: “he’s struggling to breathe, we’re going to have to move him out to a different hospital that specialises in premature babies.” So that was a hospital that was 3 hours away from where I was based so I couldn’t go with him, my husband went with him. When my husband arrived at the hospital, that was when Sepsis was finally spotted and that was when we knew he had Sepsis.
How were you feeling at this time?
Horrendous but I didn’t quite appreciate the severity of it at all. You just assume that they know what it is, they can fix it and unfortunately that’s not always the case. When something like Sepsis takes hold, it’s quite a high mortality rate. I felt horrendous I couldn’t be there with him, I couldn’t be by my boy’s side, and I guess it was the unknown of how did he suddenly get this? I hadn’t really heard of this before but I did have Sepsis with my firstborn and I knew about it as being a thing. But I thought it just made you sick, I thought it just made you ill. I was very tired and very sick when I had Sepsis, but I got better. Anti-biotics fixed me really quickly and I was okay. With my firstborn, I had a very long labour and infection got in when my waters broke after too long. I felt horrendous, I felt really really sick from it but I was up and about after a week in hospital on anti-biotics and I just assumed that would be the same for Roy. You just think ‘oh medicine can fix him, you know he’ll back to fighting strong.’
What support did you find the most effective for you and your family at a time of grief?
Actually, it was Instagram. Which sounds so strange admitting that it’s a bunch of strangers I’ve never met who have given me the most amazing support. That’s why I love instagram. As much as people often talk about social media being the devil’s work and it all being forced and fake, I’ve actually found the complete opposite, I’ve got a really beautiful community around me that even now still message me beautiful thing about Roy. I’ve got a wonderful group of friends on there who have also sadly experienced baby loss for various different reasons and they’re all such amazing strong women who can give me such brilliant support and I give them support back. That has been my saviour, speaking to people who have been through similar. Being able to share Roy’s story as well, because it makes me feel like he did live, he was there for 5 days and in his short life he touched so many people and so many people know his name and his story, that is lovely as well. Instagram is a beautiful thing that is amazing connecting people and is really healing being able to share him.
What advice would you give to other parents that have any worries or are experiencing something similar to this?
If you’ve got any worries about Sepsis, don’t leave it, shout from the rooftops if that is what you’re worried about. Get everyone to double check… Anyone going through it right now just keep hold of hope somehow. It’s horrible; you can’t even explain what it’s like watching someone get that ill with Sepsis. It’s terrifying but just ask for support, cry if you need to cry and hold your child as close as you can and hope that everything will be ok. If you’re on the other side of it and your child did overcome Sepsis like Eddie did then I hope you never experience that again. But unfortunately if your child did die as well like Roy did then you can message me. My inbox is always open, I’m always happily talking to people who are going through grief or are worried they might soon be. It’s really important you have a nice community around you and you’re more than welcome to join our little one on Instagram. It’s amazing. There are also so many great charities out there if you want to do it privately. SANDS are amazing and are a stillborn and neonatal death charity but there are so many great people there with so much great advice on their forums; it’s all private and secure so I recommend you speak to them if you need to.