Neonatal Herpes Stories
By Quinn's mum and dad; Frances and Tony
One night when Quinn was three and a half months old, he made a new noise as he woke for his midnight feed; a funny little cry that stopped as quickly as it started before he went back to sleep peacefully. The next morning, he did it again, a jittery repetitive moan. When he did it a third time, we knew something wasn’t quite right and took him to A & E. On the way, he did it again and his arm started shaking too and for the first-time it occurred to us he could be having a seizure.
Not long after we arrived in the A&E waiting room, he started fitting again and now it was clear he was having a seizure. Quinn was rushed into Resus and closely monitored while they administered anti-convulsants. We were able to gently stroke his tiny hand to re-assure him until thankfully, the drugs eventually took effect. Once he was stable Quinn was taken for a CT scan to see if it could throw any light on the cause of the seizures and he was admitted to the children’s ward where, over the next few days, he continued to have several more seizures; that squeaky moan as his tongue wagged and those little jitters with his right hand clenched, etched into our memories forever.
The CT scan showed blood on his brain and a follow-up MRI scan revealed lesions that suggested they could be related to infection. Quinn had had a skin and eye infection when he was a week old and been tested for Herpes Simplex Virus (HSV). He was initially treated with antibiotics for that until, after a week wait, test results had come back positive for HSV type 1. He had then been given a two week course of oral antiviral medicine and he spots cleared up quickly so we believed the treatment had been successful.
Despite this previous HSV1 infection, Quinn was only briefly given intravenous antivirals after presenting with the seizures. As they had been when he was a week old, the paediatricians seemed reluctant to give the invasive antiviral treatment until test results confirmed a current HSV infection, he was instead given intravenous antibiotics. By the fifth day, his seizures had increased in severity and his responsiveness had deteriorated to the point that the decision was made to transfer him to a paediatric intensive care unit (PICU) at a hospital 20 miles away.
After arrival at PICU, Quinn was finally put on intravenous antivirals and thankfully, after one night on PICU, he had improved enough to be transferred to a paediatric ward. During this long week, Quinn’s development seemed to regress; briefly returning to newborn-like but luckily within days of starting the treatment we observed him relearn skills and we were flooded with relief when he smiled again for the first time. The intravenous antivirals given to him for several hours a day over the next three weeks saved his life.
Samples were taken in attempt to confirm that this nightmare had been the result of a Herpes infection but they all came back negative. However, he received the diagnosis of probable HSV1 infection regardless based on his previous known infection and his rapid improvement after receiving the antivirals regularly. After four weeks in hospital, Quinn was finally discharged. He continued on anti-convulsants for few months and oral antivirals until he was a year old.
Quinn is now four and he’s a happy, healthy, smart little boy. The doctors have told us that if the virus was to reactivate it would likely result in a skin infection and not affect his brain again. Thankfully he hasn’t yet had a repeat episode of even a skin infection. However, as a result of the damage to his brain, he has mild motor delay. He is currently receiving help from Occupational and Speech and Language therapists because he has trouble with his muscle control particularly of his right hand and mouth; the parts of his body we witnessed bear the brunt of the seizures, as eternal reminders of what he suffered through.
We wish neonatal herpes was more at the forefront of healthcare professionals’ and parents’ minds. Quinn’s story is full of ‘what ifs’; what if the midwife that thought his spots when he was a newborn looked like chicken pox realised that HSV lesions look very similar and sent us back to the hospital at that point, what if the paediatricians considered HSV more of a likely diagnosis and gave him antivirals while waiting for test results, what if they had been more willing to use the intravenous antivirals, what if they (and us) had been more aware of the risk that the infection could return after several months and what that might look like.
How Quinn picked up the infection remains unresolved. We have both had cold sores outbreaks since childhood so knew we were carriers of HSV1, however neither of us had recently had a lesion at the time of his birth and don’t remember having one during his pregnancy. He was a C-section birth which is carries a low risk of transmission from mother to baby and he should have had some immunity from antibodies passing across the placenta during pregnancy.
Until we read information on the KTF website, we were unaware that herpes can be transmitted in the absence of symptoms and we are not sure it is well known amongst healthcare professionals because they have never mentioned it to us. Quinn’s story really highlights the need to increase awareness in healthcare professionals and the public that herpes infection should be considered in all babies who are unwell.
Read more stories of neonatal herpes infections here.