Neonatal Herpes Stories
By Joshua's mum; Beth
Our beautiful baby Joshua was born 10 days after his due date on the 29th Jan 2021. After a straightforward pregnancy I was booked in for an induction which was moved forward a day after some reduced movement. 7.5hrs after my waters were broken, he came into this world weighing 8lb7oz and was absolutely perfect and healthy.
After 2 days on the post-natal ward where we were recommended topping him up with formula as he had not weed in 24 hours and had slight tongue tie, we were able to go home with his tongue tie appointment booked in for the next day. The midwives that birthed Joshua and the post-natal care we received at Basingstoke hospital was brilliant. Joshua was breast feeding well alongside the formula top ups and we had a feeding plan in place.
We had our normal midwife appointments throughout the week, I had been flagging some concerns at each appointment: Joshua was not waking up for feeds throughout the night but when he did wake up he was feeding ok for the first few days. He then did start to struggle to latch quickly and we were advised to increase the formula feeds to make sure he was getting enough food. All of this was put down to normal new-born behaviour. Other concerns I was flagging were short breathing and raspy breaths. At Joshua’s day-5 appointment he did not cry when he had his blood taken but I was also assured that could be normal behaviour. Every appointment we were consistently reassured, and I had to put my gut instinct down to ‘new Mum’ concerns. On the Friday when he was 6 days old, I had an additional midwife appointment due to my concerns and the feeding plan really made a difference that day - Joshua was waking more and was more alert. We finally felt like we had a new-born baby. It was the best week of our lives and we had so much love for him, we were absolutely besotted with our perfect son.
The next day our lives changed forever, my husband Callum noticed that Joshua’s forehead was slightly cool to touch and so we took his temperature. One thermometer was not registering his temperate and the other one was reading 34 degrees. We were still in the post-natal ward’s care and the community midwife told us to come in to get his temperature taken. We thought it would be a short visit due to our dodgy equipment and we would be home again in a couple of hours.
A further 3 thermometers were not registering at the hospital and every part of me knew something was wrong. The paediatric doctors were quickly called and after an examination the doctor turned to us and said we had a very poorly baby. Joshua was taken down to the Neonatal Ward and put in an incubator to get his temperature up. Antiviral medication was given, and blood tests taken to try and get to the bottom of the issue. I can remember thinking how big he looked compared to all the other babies on the unit as most of them were premature and tiny.
We were sat down by the Consultants and asked about family history, the pregnancy and I was able to give details of all the things that had happened that week and the concerns I had flagged. They were discussing metabolic concerns and a transfer team from Evelina Hospital were called as this is what they specialise in. Once I had given the details of all my concerns the paediatric doctor who had first looked at Joshua called out HSV as a possibility and they did the tests immediately. He had already been given the antivirals for this which gave us some hope.
We were by Joshua’s bedside and he started to have a seizure. Our perfect, beautiful boy was deteriorating so much and there was nothing we could do to help him or save him. We were told he was going to be put into an induced coma and we knew this could be the last time that we would get to see him whilst he was conscious. This Neonatal unit did everything they could and their compassion and kindness will always be remembered by us.
It was confirmed that he had HSV or herpes simplex type 1, and that he now had sepsis. We were so confused at what HSV was, how he had been exposed to it and how fatal it was going to be. We still had hope but now know how naïve we were.
The painstaking hours passed, and we were finally transferred to Southampton PICU by the fantastic Evelina Transfer Team. It was like a nightmare you see on films when we arrived at midnight following Joshua in a travel incubator through the hospital, where the corridors were lined with patients due to Covid. We were told it would take some time to transfer him to the PICU equipment and get him settled and as we were exhausted, we ended up getting some sleep to then get up early to sit with him.
The hospital shifts changed and were introduced to new nurses and doctors. The nurses were so kind and compassionate which made such a difference when our whole world was crashing down around us.
At around mid-morning the 2 x PICU consultants sat us down and told is that our baby Joshua was not responding to any of the medication and that his body was shutting down. The sepsis had taken over his body and the machines were keeping him alive and he was not going to make it. The decision was taken out of our hands that the machines were going to be turned off as he could not come back from the damage that had been done. We had to say goodbye to our perfect first-born son at only 8 days old, only 26 hours before we thought we had a perfectly healthy baby boy. He had so many fluids in him he did not look like Joshua, he was taken off the machines for us to cuddle him and say goodbye. Our hearts were broken, and our bodies were in complete shock.
We will never know how Joshua contracted HSV, but it is likely that he got it from my birth canal during his birth. Neither me or my husband had ever had any cold sores or any other symptoms of HSV. We will never know whether my anti-bodies for HSV were not passed on, or whether I contracted it myself at the end of the pregnancy, so my anti-bodies did not have time to be passed on. A fact we have had to accept, and a reason why so much more needs to be done to drive awareness and research of HSV.
Our perfect, strong, and beautiful baby Joshua died on the 7th February at only 8 days old.
Read more stories of neonatal herpes infections here.