'She was our first child and she was so wanted'- Dad of baby Eibhlín who died after contracting neonatal herpes
The father of a newborn who died days after contracting neonatal herpes has urged people to be aware of the dangers the virus can pose to vulnerable babies.
John Wills and his wife Louise tragically lost their first-born daughter Eibhlín just 12 days after she was born in 2015 after her organs began to fail. A post-mortem revealed that baby Eibhlín died after being exposed to the herpes simplex virus (HSV-1), also known as oral herpes or the cold sore virus.
After her death, Eibhlín’s mother Louise was tested for the virus, and was found not to be a carrier. John and Louise believe that Eibhlín came in contact with the virus early on in her life in the National Maternity Hospital, which devastated her major organs before she became symptomatic.
In recent days, Iowa mum Nicole Sifrit made the headlines when she warned other parents of the dangers of exposing newborns to the herpes virus, after she sadly lost her daughter Marianna to the virus. The mum claimed that the baby was kissed by someone who had a cold sore, which led to her contracting the virus that ended her life.
Since her death, Eibhlín’s father John, from Rathfarnham in Dublin, has become passionate about raising awareness of neonatal herpes in Ireland, which although rare, has had a devastating effect on his family.
“The reason we decided to go public so soon after losing Eibhlín was because there is little or no knowledge about neonatal herpes, even amongst doctors. But cases like Marianna’s and of course our own tragedy show that it can happen, even if cases of this are rare.
“In our case it’s important to say, Eibhlín didn’t get the virus through a kiss. It was something she picked up very soon after she was born in the National Maternity Hospital. We know this because Louise and I both tested negative for the virus.
“Eibhlín was our first child. She was very much wanted and when she died it was awful, it felt unreal,” he said.
In Ireland, neonatal herpes simplex is not a notifiable disease, which means that statistics are not kept and the number of children who have died from the virus in Ireland is unknown.
Statistics from the US have found that there are 33 cases of neonatal herpes in every 100,000 births, while in the UK the figure is between 1 and 17.5 cases per 100,000 births.
John and Louise have set up an awareness page “Remembering Eibhlín” and one of the couple’s main aims to to have the virus recognised in the list of notifiable diseases in Ireland. This would mean Irish medical professionals would not have to rely on statistics from our American or British counterparts, but instead have relevant statistics to help prevent neonatal deaths from the virus in Ireland.
“In Ireland, neonatal herpes simplex is not a notifiable disease, which means that there are no statistics to reflect how many outbreaks of this virus or how many deaths have occurred because of infection.
“We hope that we will shortly have a meeting with Minister Simon Harris to discuss some of the aims of the Remembering Eibhlín campaign.
“If neonatal herpes simplex was a notifiable disease here, we would have the same accurate statistics as they do in places like Australia, the UK and the USA, which is what we have to base a lot of our knowledge on because we don’t have our own statistics.”
“The fact of the matter is that in Ireland we just do not have the same awareness in other countries. I have a friend who welcomed a baby in the US. He would be a sufferer of cold sores. He was given the advice he needed, not to kiss the baby, to cover up the cold sore, and to use anti viral creams from the onset.”
John also hopes the campaign will encourage a change in Irish policy surrounding the virus. While Eibhlín died of herpes simplex virus 1, or oral herpes, herpes simplex virus 2 (genital herpes) also threatens the health of newborns.
According to foreign statistics 85pc of babies who have died of neonatal herpes simplex have been infected with type 2, and John hopes that Eibhlín’s campaign will encourage a change in policy also.
“At the moment, Irish mothers aren’t screened for herpes in pregnancy which in our view is problematic. Based on statistics from abroad, 85pc of neonatal herpes cases are passed from mother to baby during birth. Mothers may not tell their physician that they have the virus but by screening, this could be picked up during pregnancy,” he said.
“The National Maternity Hospital has been supportive in the wake of Eibhlín’s death and have put into place a number of changes to prevent this happening to somebody else.”
The dad said there is some comfort in working towards a better awareness of the virus that took his daughter’s life.
“The reason we were so determined to go public with our own story was to prevent the same tragedy happening to somebody else. That no other baby could contract this virus.
“Many of my friends have said we’ve done what we needed to do in terms of raising awareness. I’m not one to stay quiet. In grief you can easily get into depression and sadness, and I certainly did, but you can also build from that. If you can help someone else from going through the same thing, if we can make this a notifiable disease and bring this to life it is worth it.”
“When you’ve gone through something like that, it does put things into perspective. Like when you’re stressed or worried about something, you think back to that awful time after losing her and think, this is nothing compared to that.”
“For us we left the hospital with a beautiful normal baby, but it all changed so quickly.”
For more information on neonatal herpes simplex visit www.rememberingeibhlin.org
Precautions parents should take when it comes to the herpes simplex virus
If you suffer from genital herpes simplex, let your physician know.
Avoid direct contact with young babies if you are suffering from a cold-sore
If you suffer from herpes simplex, use anti viral creams
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