Today we hear from Sharon Thompson from Donegal, Ireland, who shares the story of her daughter, Victoria. Sharon is a member of ‘Our Children’s Voice’, a group of parents who hope to give children who have life-limiting conditions or high medical/physical needs a voice that will be heard.
This is Victoria Thompson, in LauraLynn, Ireland’s only children’s hospice.
LauraLynn, helped Victoria to have a ‘safe’ death. Victoria died, as pain-free as possible, surrounded in love with the best palliative care, at exactly nine months old. (27th June 2012). We miss her and love her always.
What took away Victoria’s twinkle?
A rare leukodystrophy stopped her developing myelin, which insulates nerves. Victoria cried, a terrible cry, for months. With no cure or treatment, we were told that Victoria would die at possibly two years old. ‘Palliative Care’ was mentioned. I googled it too. Nothing made sense.
Told to make memories?
Myself, my husband Brian, extended family and friends, were told to take Victoria home to Moville, Donegal from the Dublin hospital. This is a rural location, an eight- hour round trip from the hospital that knew her.
“All good parents take their child home to die in Ireland,” we were told. At that time, even the wonderful charity, Jack & Jill Foundation, couldn’t find us a nurse in our area. (Since then, there are more trained nurses available).
But, we were told to take a heavily medicated Victoria home (five months old), in constant pain with many horrendous symptoms – ‘take her home to make memories’.
This to me, was not care… of any sort.
True palliative care. A safe place for Victoria
We knew in our hearts, Victoria needed to die with as much dignity and peace as possible. We found LauraLynn, the children’s hospice, in Dublin.
Here, in this happy place, Victoria received the care and protection, all life-limited children deserve. For us, a children’s hospice is a special place and not a place to avoid. Although there is sadness there, a children’s hospice does not have to be a sad place. Victoria was one of the first and only long-term patients in LauraLynn. Due to her geographical location from Dublin (eight hours’ round trip by road), the severity of her condition, lack of any paediatric palliative medical supports in our area, and the newness of [this being] the only children’s hospice, Victoria was ‘lucky’ to receive full-time care for three months.
Although home care and respite is quoted as the ideal situation for most families, it most definitely was not possible for Victoria. Thankfully we had full-time care for her. This is why I am a passionate advocate, for hospice care that is not just respite driven.
Please watch this RTE documentary ‘No Time to Die’ which documents the palliative journeys of Victoria and other special children in Ireland.
I write about Victoria’s life and beyond in this blog. Also, check out Palliative Hub – Children and Young People, which is the first gateway to information for the island of Ireland about children and young people’s palliative care for parents and families. I was involved in developing the site with the All Ireland Institute of Hospice and Palliative Care.
Sharing Victoria helps to ensure that other life-limited children get the services they deserve.
Children die. Victoria died.
Victoria never had a voice while she was alive but, we feel, that we give Victoria’s life, a voice.
‘Our Children’s Voice’, is a group I belong to. We try to improve services and give a voice to terminally ill, rural children in Donegal. (Facebook Group) Because of Victoria, I have also become involved in European Patients‘ Academy on Therapeutic Innovation (EUPATI), which aims to provide scientifically reliable, objective, comprehensive information to patients on medicines research and development.
Please believe in the magic of a baby girl called Victoria, and give a strong voice to all children needing palliative care.
More about children’s palliative care in Ireland
LauraLynn is the only children’s hospice in Ireland and the majority of care provided by LauraLynn is respite care. Children’s palliative care aims to provide care in the location of choice. For many reasons, the majority of families wish to care for their child at home with suitable supports in place. There are, however, some children and their families for whom care at home is not possible and a children’s hospice provides one alternative in these cases. Children’s palliative care is a relatively new specialty in Ireland. Since the publication of a national needs assessment in 2005 and a national policy for children’s palliative care in 2010 services have developed and evolved. A combination of statutory and voluntary funding has resulted in the development of a consultant-led specialist hospital palliative care team in the largest children’s hospital in Ireland, a network of eight community-based children’s palliative care nurses across Ireland and the development of a range of educational opportunities for nurses and other healthcare professionals. The combination of these initiatives, coupled with collaborative working between voluntary organisations already working with children with life-limiting conditions in the community, (Jack and Jill Foundation and LauraLynn) has resulted in children’s palliative care increasingly being recognised as a vital component of care for children with life-limiting conditions in Ireland.
Read more ‘Palliative Stories’ on the EAPC blog
Look out next month for the next story in this series. If you missed the previous posts in this series, please click here. If you have a patient, or a family member or friend, who would like to contribute to the series please contact the editor.
A message from the EAPC
We would like to thank everyone who has kindly contributed to this series of ‘Palliative Stories’. In publishing patients’ and families’ stories we are aware that content may sometimes focus only on one side of the story but we hope that the stories will help us all to better understand people’s palliative and end of life care experiences. Unfortunately, we are not able to give advice or comment on individual cases but we share in the distress that our contributors have experienced.