It is every parent’s worst nightmare. A tiny newborn baby suddenly fighting for his life, in the midst of a global pandemic. Out of the blue, new mum Rachel was forced to summon up every reserve of strength that she had and trust her instincts as her 8 week old son became seriously ill.
She bravely takes up her story here.
It was 28th January 2021. We were still in the midst of the second wave of COVID and I took my newborn baby son Carter for his standard 8-week jabs. It is possible that he may have had a temperature before but he spiked a fever by the evening after the jabs and developed mottled skin and was crying and pale – what I know now are some of the classic symptoms of sepsis in babies and small children.
I instinctively knew that something wasn’t right so I took Carter to the Royal United Hospital (RUH) in Bath. He was seen in A&E but they told me that his symptoms were due to the vaccinations and we were sent home.
The next day Carter’s symptoms had worsened though so I went back to RUH where he was kept overnight for observation before being discharged in the morning.
By the next day Carter had become unresponsive and lifeless so I immediately took him to another local hospital before being transferred back to RUH where a doctor could immediately tell that something was out of the ordinary. He – the doctor – was with another child in a different room, and I saw him rip off his PPE and he came straight into ours, straight over to Carter. There was no waiting around; you could tell that it was an emergency. He did a few checks – I think he listened to his heart through the stethoscope, and then looked at his numbers, and he turned around and he said, ‘Your baby is very, very sick.’
He told me that within a minute, nurses would come in and that they would need to take Carter away. He said, ‘We need a lumbar puncture. We need….,’ and then he listed off a number of things. He said, ‘I’m a very, very happy doctor, but when I’m serious, I’m serious. You need to let people take your baby. We’re going to take him into another room. You have to stay here, and we will bring him back.’
Suddenly all of these nurses came in, picked Carter up and just took him away. Those few minutes were just the longest minutes of my life. There was a nurse, and I just turned around to them and I said, ‘Please look after him.’ It was awful. They took him away, did a lumbar puncture, and the doctor came in and said that even just by looking at him his diagnosis was sepsis. And when the results came back he was right – Carter did have sepsis.
He was admitted for about a week. Those first few nights were just the worst. They couldn’t settle his temperature and I remember saying, ‘Is he going to be okay?’ And they just turned around and said, ‘We’ll do everything we can.’ They couldn’t even tell me at that stage whether he would be okay. So yeah, it was horrific. Over the course of the next five days they did some blood tests and they discovered that he had E-coli in his blood, and we couldn’t work out why. So they did some X rays, and they discovered that the tube from his kidney to his bladder was too wide, so instead of wee coming out as it should it was flowing back into his kidneys [1]. So he was diagnosed with that. It’s actually just something that has got better as he has got older, but he was then on six months’ worth at least of antibiotics, and it seems that his immune system was probably weakened by the antibiotics. Initially though he was treated with IV antibiotics for the sepsis and he was looked after in a high dependency baby ward over that week.
Since then Carter has actually been diagnosed with Type 1 diabetes. I’m on a Lockdown Mums’ forum on Facebook, and I wrote down all of his symptoms and someone said, ‘I don’t mean to scare you but it sounds like what my son had,’ which is a condition called DKA – Diabetic Ketoacidosis[2]. So I looked into it and I thought, ‘My gosh, that sounds exactly like what he’s got.’
Now he’s doing well. He does catch a lot of RSV[3] viruses. He’s had tonsillitis multiple times. He doesn’t have the best immune system, so I’m very careful who he’s around, very careful – kind of trusting my instincts. Whenever he goes into a hospital, I listen to myself, to my opinion, before any doctor. If it wasn’t for that one certain doctor that diagnosed him with sepsis, he wouldn’t be here today. Thank goodness for that doctor. If I hadn’t trusted myself though, he would not be here today. No one knows about sepsis. If you look at TikTok at the moment people are asking, ‘What are the symptoms?’ ‘What can we look out for?’ And I’m thinking, this is one of the number one killers. How do we not know about it? It’s just madness.
And there is life after this as well. I see how happy he is and how he is thriving… We were lucky. I always say he is my little sepsis warrior.
Charity comment: Rachel’s story firstly illustrates clearly how important it is for parents to trust their instincts when it comes to illness in their children. After just 8 weeks, Rachel already knew that what she was seeing in her baby son didn’t feel right and she pushed to get him the help he needed – even though this meant repeat visits to hospital over several days.
Sepsis remains a notoriously difficult condition to diagnose. One reason for this is that there often appears to be a very small window of opportunity, when the standard symptoms of an infection deteriorate to become those of sepsis, and a patient’s condition can then decline very rapidly from there. As a charity Sepsis Research FEAT would always advocate that patients or those accompanying them to hospital remain vigilant if they are initially sent home, and that they have the confidence to re-present urgently to A&E if they see a further deterioration after initial discharge, asking the question, ‘Could this be sepsis?’
[1] this refers to a medical condition called Vesicoureteral Reflux (VUR) where the tube (ureter) from the kidney to the bladder is too wide, causing urine to reflux back into the kidney. This condition can lead to urinary tract infections (UTIs) and, if severe or untreated, can potentially cause kidney damage. VUR is often diagnosed in children and can range in severity from mild to severe.
[2] Diabetic Ketoacidosis (DKA) is a serious and potentially life-threatening complication of diabetes, particularly Type 1 diabetes, though it can also occur in Type 2 diabetes under certain conditions. DKA occurs when the body starts breaking down fats at an excessive rate due to a lack of insulin. This leads to the production of ketones, which are acidic and can build up in the blood, leading to an imbalance known as acidosis.
[3] Respiratory Syncytial Virus (RSV) is a common and highly contagious virus that infects the respiratory tract. It is a significant cause of respiratory illness, particularly in young immunosuppressed children, but it can also affect adults.