Updates

Almost a year on from Eibhlín's inquest. We are still working in our daughters memory, to share her story.

Very grateful to Minister Harris for putting us in touch with the Irish College of GP's.

Today we will be presenting Eibhlín's story of her little lifetime while also using the opportunity to encourage communication & support around grief at the #ICGPTraineeConf2019 in Galway.

Huge thanks to Caroline Lloyd, her invaluable friendship and amazing book "Demystifying Grief"

Also to the wonderful lady Aoife Korean who wrote a book Rory's Rainbow about love & grief after her son Rory sadly passed way.

We were delighted to be asked by the Department of Health to join them in working on their National Framework for Infectious Disease Control

A great opportunity to give the patients voice of their experience of the healthcare system in Ireland.

We looking forward to continuing to work with the team

We also received the opportunity to work on taskforce groups with the National Women's and Infants Health Programme with the HSE regarding Learning Notices.

We are pleased to update that Minister Harris signed Neonatal Herpes into law as a notifiable disease.

We do hope that with our campaign in Eibhlín's Legacy, that there will be no more Neontal Herpes deaths, and a reduction in the figure of those contracting the virus. 

We are truly happy that going forward there will be Irish statistics. Parents will no longer need to learn of those from the UK, USA & Australia. 

With huge thanks to all who worked so tirelessly on the relevant documentation in the Health Protection Unit in the Department of Health to achieve this is Eibhlín's memory. 

In particular thanks to Minister Harris for taking the time out to meet with us, and also for providing and offering additional support in our on going education and awareness campaign.

We have had incredible support since Eibhlín's inquest. We would like to thank all the media for helping us in Eibhlín's Legacy, all print /online outlets that shared her story. Huge thanks to those who invited us to do an interview, Virgin Media news & Ireland am, RTE News, Newstalk with Pat Kenny, Cork 96fm, Adrian Kennedy Show, Highland Radio and East Cost Radio 

Massive thanks to all our online support on Facebook and Twitter, we would especially like to thank the #wearedelivering team, for all their rt's, kind words and support in #EibhlínsLegacy, we would be lost without you all. 💜

We are thrilled to announce that we will be working with the Rotunda Hospital in Eibhlín's Legacy, the infection control unit will see raising awareness and education around the Herpes virus as a target for quarter one in 2019. They will be working to raise awareness with staff, patients and visitors using their website, app and posters. 

On foot of the Coroner's recommendations, we have received a draft Learning Notice from the National Women and Infant Health Programme. The need for awareness and education around Neonatal Herpes will be officially released to all maternity units in due course. 

Further updates will be issued as all projects/aims progress. 

Eibhlín's inquest was held on Halloween day, a significant day on this journey in Eibhlín's Legacy. The perfect day, to relive Eibhlín's stressful birth, short life & sudden death. 

We would like to thank all those who were with us in court that day, all those that held us in their thoughts and prayers. Thanks to Dermot Sherlock and Justin Morahan for their help in preparing for Eibhlín's Inquest, and for Pippa Woolnough for all her support over the last (almost) 3 years, but especially on the day itself.

A huge thanks to all the witnesses, Garda Hanley, Dr. Michael McDermott Paediatric Pathologist  from Our Lady's Children's Hospital Crumlin, Dr. Cillian de Gascun DIrector of National Virology Lab in UCD & Prof. Mary Higgins Obstetrician in The National Maternity Hospital 

Finally thank you to Dr. Myra Cullinane, and the support staff in the Coroner's office, for reviewing Eibhlín's file and calling the inquest. In such tragic circumstances, we want to ensure Eibhlín's little life and legacy will live on and prevent further heartache - illness and possible death to vulnerable neonates. So for the inquest to be called, as its a matter of public interest, for Dr. Cullinane to support our aims has been such great relief and joy in Eibhlín's name as we approach her anniversaries.

The final verdict was Eibhlín's death was due to (Herpes Simplex Virus) a Healthcare Acquired Infection. 

The Coroner's Office two recommendations are (our main aims) to make Neonatal Herpes notifiable -  which hopefully will be signed off by year end by Minister Harris. To recommend all maternity units learn a lesson from Eibhlín's death and to follow the amendments the NMH implemented after her death, we are working with the National Women and Infants Health Programme in the HSE

Department of Health

Making Neonatal Herpes Notifiable

We met with the Health Protection Unit, in August 2017 and they helped initiate this part of Eibhlín’s Legacy. 

Unfortunately, it has taken longer than hoped –

The Department has recently received a draft text of the regulations and is currently in the process of clarifying a number of technical details with the Parliamentary Counsel’s Office and colleagues in the HSE.

It is envisaged that, once these issues are clarified, the regulations can be finalised shortly thereafter.

They are still hopeful that this can be finalised and signed off before the end of this year.

Health Service Executive 

Women and Infants Health Programme 

We met with Dr. Peter McKenna, Clinical Director and Kilian McGrane, Programme Director of the National Women and Infants Health Programme (NWIHP) within the HSE in August 2017. They were both eager to fulfil our wish in Eibhlín’s Legacy, by offering their support and by encouraging all other Maternity Units within Ireland to follow the NMH’s lead in education and awareness. They subsequently went on to meet with the Master of the National Maternity Hospital. Sadly, there is no concrete update on this wish, recent correspondence with the NWIHP gave us an update –

Dr. McKenna and Aideen Quigley (Quality and Safety Lead) are studying the report they received from NMH to see if lessons can be applied nationally and sent into the system as a Learning Notice. Unfortunately, “Learning Notices” have a broad applicability rather than based on an individual case.

https://www.hse.ie/eng/about/who/acute-hospitals-division/woman-infants/quality-and-safety

needless to say, this is quite disheartening to read, to see if lessons can be applied and we would fear that Ireland would need more Neonatal HSV deaths for this to be considered a priority. It is a far cry from the promise and enthusiasm we received at our meeting in August 2017.  

Following on from our successful meeting with the Department of Health, we have now secured a meeting with the National Women and Infants Health Programme, to see how they can help us to fulfill our aims in Eibhlín's memory. 

We have our first meeting with the Department of Health with the aim of making Neonatal HSV a notifiable disease.

*Update

This meeting went very well and the team in the Health Protection Unit have commenced the first steps in aiming to make Neonatal HSV notifiable. 

Sadly another little baby girl Mariana from Iowa grew her angel wings after her battle with the herpes virus. 

We would like to take this opportunity to offer our condolences to her parents at this sad time, although Eibhlín & Mariana cannot be present in our lives, we hope they will have joy in heaven together. 💖

With this tragic news going worldwide, it was heartwarming to realise that Eibhlín was remembered, the Independent asked us if we would like to use this opportunity to continue raising awareness in Eibhlín's memory - 

https://m.independent.ie/life/health-wellbeing/health-features/she-was-our-first-child-and-she-was-so-wanted-dad-of-baby-eibhlin-who-died-after-contracting-neonatal-herpes/35955220.html

We would also like to thank https://extra.ie/ for helping us to continue to raise awareness and to remember Eibhlín - https://extra.ie/2017/07/30/news/real-life/father-whose-newborn-died-from-herpes-speaks-out