The devastating consequences of a missed neonatal herpes diagnosis

Summary

Neonatal herpes is a rare, and potentially fatal, disease which usually occurs in the first four weeks of a baby's life. Early recognition and treatment have been shown to significantly improve babies' chances of making a full recovery.

In the second blog of this series, Sarah de Malplaquet, Chief Executive and Founder of the Kit Tarka Foundation, shares Kit’s story, who died at just 13 days old. Sarah reflects on a number of ‘missed signs’, highlighting the urgent need for increased awareness among staff.  

Content

My son Kit was born healthy but died at just 13 days from what at the time was an unknown infection. Despite living almost all his life in hospital, the virus which killed him was not suspected at all until Kit was 12 days old fighting for his life in intensive care. By then it was too late. The day after he died a diagnosis of Herpes Simplex Type 1 (HSV1) was given. Kit had been on antibiotics all his life but never received the antivirals which could have saved him.

Kit’s birth

Concerns about high blood pressure in week 38 of my pregnancy led to an induction in hospital. This in turn led to hyper stimulation of my uterus and after hours of non-stop incredibly strong and painful contractions, concerns about Kit’s health meant an emergency caesarean was performed.

Despite Kit’s difficult entrance into the world, he was born a healthy baby boy with a 10 out of 10 Apgar score however after a few hours he was admitted into special care with concerns about his low blood sugar. We were devastated that he had been taken away from us but were told not to worry, they just needed to regulate his feeding for a few days and he would be back in our arms soon.

Kit’s time in the Special Care Baby Unit

Over the next few days the doctors and nurses thought Kit was getting better but in retrospect there were signs that things weren’t quite right.

He was excessively sleepy; it was rare to see him awake and he often wouldn’t wake for feeds. We were told ‘boys are sleepier than girls’, ‘it’s probably because he is having so much milk’ or ‘he’s just a sleepy baby’. He barely stirred for the many heel pricks he had or even for the insertion of cannulas. We thought this was strange and raised it with staff but again we were reassured it was normal for some babies.

By Kit’s sixth day he had stabilised enough to come down to the postnatal ward. I was so relieved that he was with me and just desperate to get him home. By this time we had started to establish breastfeeding and were topping up with expressed milk in a bottle but he continued to be incredibly sleepy and we always had to wake him up for feeds. We were taught to wake him by tickling his feet, blowing on his face, or taking off his clothes but sometimes none of these techniques worked. At no point did anyone suggest his sleepiness was excessive.

Home at last, but not for long

We had two more days in hospital as Kit was beginning to show signs of jaundice but were eventually allowed home on his eighth day. We felt broken after such a traumatic week but were delighted to be home and looking forward to the next chapter.

Unfortunately, that feeling was short-lived as he hardly woke up that first night, was struggling to feed at all and started to look more yellow. The Community Midwife came the next morning and recommended we take Kit to the Children’s Hospital to be checked for jaundice. On arrival, staff recognised something wasn’t right and admitted him straight away. A blood test showed infection markers, and a bacterial infection was suspected despite him being on antibiotics for three days in special care.

Kit’s last days still with no diagnosis

The doctors were concerned about Kit but thought he would get better in a matter of days after treatment with antibiotics. He did show some signs of improvement but then got sicker and sicker, finding it more difficult to breath, having suspected seizures, making grunting noises and not being able to stabilise his blood sugars. The doctors could just not work out why he wasn’t responding to treatment. A lumbar puncture was taken to test for meningitis, a metabolic condition was thought likely and a reaction to my breastmilk was also suggested but at no point was a herpes infection mentioned or tested for.

By Kit’s twelfth day he was so poorly that he was put in an induced coma and rushed to intensive care in London where the doctors did everything they could to save his life. It was all too late though, and he died the next day. I will be haunted forever by the memory of watching a doctor perform CPR on his tiny swollen body with his clothes soaked in blood. The baby who died in front of us bore little resemblance to the absolutely perfect, healthy baby boy born just 13 days earlier. It was only in intensive care that the doctor looking after him thought about HSV and this diagnosis was confirmed the day after he died.

Neonatal herpes transmission

Herpes is usually transmitted to a baby from their mother during a vaginal birth but Kit was born by caesarean, I had never had a cold sore or genital sores and tests carried out subsequently confirmed no trace of HSV in my blood. As Kit spent almost his entire life in hospital we can only assume he picked up the virus there, possibly by someone touching a cold sore then touching Kit. As he was only ever given antibiotics and not antivirals, he never had the chance against such a devastating infection which in the end overwhelmed his entire body.

When the doctor who had looked after him for most of his life heard the diagnosis, he said he was ‘kicking himself’, that he had never considered or tested for HSV.

Missed signs and the what ifs

Another missed sign is that during my time in hospital I started to develop blisters on one of my nipples which were extremely painful and these turned out to be caused by a new HSV infection (swabs were taken after Kit died at my insistence). At the time they were put down to friction caused by the breast pump or possibly thrush. Now we are told it is likely that Kit had passed HSV to me during breastfeeding.

There are many other ‘what ifs’ in Kit’s story which continue to play on my mind. What if our concerns about his sleepiness and lack of reaction to pain were taken more seriously, what if any one of the doctors who cared for Kit had considered HSV, what if the person who passed HSV to Kit had a cold sore but knew they shouldn’t work clinically that day, what if his low blood sugar had been picked up early and he didn’t have to be admitted to special care at all.

We established Kit Tarka Foundation to eliminate those what ifs and we hope by sharing this blog we may have eliminated one more.

Read Sarah’s first blog of the series: Neonatal Herpes - More common than you think?

Information for healthcare workers and parents

More information can be found at:

• Website: kittarkafoundation.org
• Neonatal herpes information and advice page
• Latest research study detail.