PARENTS OF A baby girl who died at just 12 days old from a cold sore virus have called for greater awareness and policy changes.
Eibhlín Wills was born by an emergency Caesarean section in the National Maternity Hospital on 19 November 2015 to first-time parents, John and Louise Wills.
“She just had 12 days with us but in those 12 days they were very, very special,” John Wills told Keelin Shanley on RTE Radio 1 this morning.
Weighing in at a healthy 7lb 11oz, the baby girl was sent to the Neonatal Intensive Care Unit as a precautionary measure as she had become a little distressed prior to delivery but after five nights in hospital she went home with her parents on Tuesday 24 November.
“She was perfect, she was amazing. She slept so well, she fed so well, I would go for a nap with her and have the best sleep of my life,” said Louise Wills.
On Friday of that week Eibhlín had her first visit from the public health nurse who examined her and all appeared well.
The first indication that anything was wrong was when Eibhlín was ten days old and her parents noticed that she had “a bit of a cold” and was feeding “a bit less.”
There was no cause for alarm until 11pm on the Monday evening when Eibhlín’s colour suddenly changed and she became listless.
“She went from being clingy, sniffly to being that bit fatigued. In the space of two minutes she went listless and went pale in front of us, her lips went blue,” said her father.
John and Louise frantically drove to Tallaght A&E where upon arrival Eibhlín was immediately taken in and a crash team called.
Tragically, Eibhlín was pronounced dead at 1:09am on the Tuesday morning, a week to the day after she had come home from hospital.
“They did their best but they couldn’t save her. Cot death was ruled out. There were no red flags until it was far too late,” said John Wills.
Eibhlín’s death
Following a post-mortem the cause of death was identified as the herpes simplex virus 1 (HSV-1) which is more commonly known as the cold sore virus.
In Eibhlín’s case it was Disseminated Neonatal Herpes Simplex Virus 1, which incubates for a time and results in multiple organ failure but there are no symptoms until it is too late.
Neonatal HSV is a very serious condition, and in some cases (as in baby Eibhlín’s) can be fatal. Typically, in 85% of cases, neonatal HSV is transferred from the mother to baby during delivery, in a so-called vertical transmission. Infection of the baby during pregnancy occurs in a further 5%. However, in 10% of cases it is transferred from another person to the baby after birth, as happened in Eibhlín’s case.
“Eibhlín contracted the virus postnatally and although we may never know from whom or exactly when it happened, we know from tests that the virus was already in her system when she came home from the maternity hospital with us. In a place where she should have been safest, she contracted it there,” said Louise.
“We just know it happened shortly after birth. It could be a simple accident or someone accidentally touching their cold sore and then giving her a drip or food or doing something,” she added.
“No-one else should have to face what we did”
Since Eibhlín’s death John and Louise have discovered that acquiring accurate statistics on new born babies with the cold sore virus in Ireland is difficult. This is in part due to the fact that neonatal herpes is not a notifiable disease in this country. They hope this will change in the future and will be calling for the Minister for Health to make this a reality.
While the figures from Ireland are not known, figures from the UK show that fatalities from the virus range from 1.65 – 17.5 cases per 100,000 births.
Louise recalls that she and John were in total shock when they realised that such a common virus as a cold sore caused their daughter’s death, and horrified at the lack of information available.
“We are sharing our story in Eibhlín’s memory so we can create awareness about the dangers of cold sores and new born babies. We want all parents, parents-to-be and any medical staff working with them to be made aware of the risks so no one else ever has to face what we have gone through” said John.
Their advice to people is not to kiss a baby if they have an active cold sore or the sensation of one starting.
John and Louise have launched a website in Eibhlín’s memory which they hope will help them with the grieving process and which they have asked the public to support and share.
To embed this post, copy the code below on your site
have your say