Neonatal Herpes Stories
By Caius' mum; Elouise
Caius is our first child, he was born at 41 weeks gestation on the 16th of May 2020. When I held him for the first time, my entire world transformed and I felt like my heart would burst.
At 5 days old, we had the health visitor come to our house to do a quick check up, heel prick and make sure everything was going well for us, and it was, it was perfect. It was a scorching hot day, we'd spent the day cooing over him and staring at him. I had a funny feeling, I can't describe it, almost as if I knew something wasn't right. He'd taken feeds, and he'd had wet nappies, but I hadn't seen his eyes open all day. Before we were about to go to bed, even though he was asleep, I thought I'd change his nappy and make him all fresh and cosy. When I picked him up, his back was like fire. Now I've not held many newborn babies, so I didn't know if that was normal. We'd luckily managed to get our hands on a thermometer (lucky because with covid most were sold out). 38.6 degrees. I called the maternity department and they suggested taking him into A&E to be safe.
We live 3 minutes away from the hospital so we bundled him up and took him in, by the time we'd arrived and he was getting checked, it was 39.1 degrees and a heart rate of 200+. It was horrifying. All of a sudden doctors and nurses bundled in, followed by a lead pediatric consultant (I think I knew then this would be serious), cannula in the hand, antibiotic administered, anti fungal given, heart rate somewhat stabilised, transferred to the children's ward.
I was in a daze. 36 hours passed, bloods taken, gasses taken, lumbar puncture performed. But before we could get all the results, his dad noticed him blue in the cot beside the bed, he needed oxygen support and we were moved to the high dependency unit. Shortly after the results came back, positive for Herpes Simplex Virus 1 present in the cerebal spinal fluid. We were devastated, confused. Neither of us have ever had a coldsore, we live with family members who have, but still to this day were not 100% sure how it was transferred.
Antivirals were administered. 21 days of them planned, every 8 hours. He had HSV lesions start to appear on his torso and back. Then came all the tests, MRI, CT, ultrasounds, bloods getting taken by the minute. His liver had begun a heightened immunoresponse and his ferratin levels were sky high. The liver was in distress. There was talks of transferring us to either the local children's hospital or a hospital three hours away with a dedicated liver unit. Thankfully, we were able to remain local. Although, the hospital we were going to was stricter with Covid rules, it was a one parent only policy, we would be allowed to swap every few days but not allowed to stay together.
After medications in the long line in the arm had been constantly administered, we needed to have a groin line inserted, so it was down to theatre. Signing the weiver to say I consent to this and accept there could be a chance of death was just horrible to read in black and white in front of me. He was nil by mouth before his operation and all's he did was cry, it's primal to feed your child and this just broke me into bits seeing him hungry but knowing there was nothing I could do. He was on IV fluids and he was so swollen, like unrecognisable. It was so difficult to see our baby like that and to feel so helpless.
Around 10-14 days after initial diagnosis. All brain tests were clear, infection markers were coming down, the liver had stabilised, we were slowly weaning off oxygen dependency, the feeding tube had come out... I don't know how my tiny child had done this, but he was coming through the other side, the acyclovir was working.
One week later, we brought him home and it was far, far sweeter than the first time we'd brought him home because we'd been so close to losing him. But he was here, and completely unaffected, like it had never happened, except for two tiny scars, one from the hand cannula, and one from the groin line. War wounds, thankfully ones he won't remember getting!
6 months of oral acylovir, every six hours. Just to make sure he didn't have a re-emergence. 22 months later, we've had no HSV outbreaks.
He's hit every single milestone. Rolling, crawling, walking, talking, eating, exploring... An absolutely normal toddler. I know we're lucky, I know how many factors came into play. Our hospital were on the ball, we were given medication promptly, it luckily never went into the brain fully, we never experienced a seizure, it went to the liver (which can regenerate and heal itself), if it had gone to another organ who knows. If we'd picked him up and just put his temperature down to a hot summers evening... It doesn't bare thinking about.
This is Caius' story. But it's not just his, it's so many people's stories, and they're not all happy endings. That's why it's so important what the Kit Tarka Foundation does. I wasn't told about HSV when I was pregnant, I didn't know the dangers, the risks, the outcomes that could come of it. I knew absolutely nothing until my baby had wires and tubes coming out of him in every direction.
We're now expecting our second baby, another boy! It's a really exciting time, but there are some nerves, because we never truly knew how Caius got so poorly. But, we do know now to be much stricter with hand hygiene, visitors, rules on handling our newborn baby.
Read more stories of neonatal herpes infections here.