‘We want Fiadh to be able to spend the time she has left at home with her family’ – four-year-old granted home palliative care after desperate plea from family

Fiadh O’Connor, from The Ballagh in Wexford, was diagnosed with aggressive neuroblastoma in 2019 and has fought a valiant fight since.

However, her family were left devastated when they were told in Crumlin Hospital this month that her cancer has relapsed for a third time despite intensive treatment over the last three years and that she will need end-of-life care.

Her aunt, Orlaigh Murphy, yesterday made a public appeal, contacting the media in a bid to get the medical support to allow the little girl return to her loving family to be looked after by her parents Laura and Rory along with her adored brother, three-year-old Páidí.

“On the worst day of our lives, we were advised by the paediatric oncology team and palliative care team that we would have to put pressure on publicly, through any route of media and politically, through our local TD to get Fiadh access to palliative care at home,” she revealed.

“In such a heartbreaking time, we need help to get services that are provided in every other region within the HSE.”

She said they had no option but to highlight their predicament.

The south-east is without paediatric palliative care since 2017 and it was feared it would not be possible to allow Fiadh to spend her final weeks or months with her family.

After being contacted by the media yesterday morning the HSE issued a statement in the afternoon that “a comprehensive package of care has been finalised to allow this child to be cared for at home”.

A spokesman said the HSE is “very sorry that this took so long”.

In response, Ms Murphy expressed relief, saying it was sanctioned by the chief operations officer of the South and South East Hospital Group and that discussions with the community palliative care team will happen next week.

The O’Connors are the second family in the region in recent months to have to plead for home palliative care for their child. Last year Lisa and Lar Norris from Glasha, on the border between Tipperary and Waterford, also had to battle to secure palliative care for their son Danny (7) who also suffered from neuroblastoma.

The boy with “a heart of gold and will of iron” died in December.

Earlier yesterday, Fiadh’s aunt said: “Since 2017, paediatric palliative care has not been provided for multiple young children that died, with the most recent case brought by Wexford TD James Browne four months ago.

“The same is happening now to Fiadh. This is a detrimental fault in the care we provide our most vulnerable.”

In a letter to the local TD, Fiadh’s parents said: “We have received the devastating news that there is no cure for Fiadh’s disease at this stage.

“She has now been referred to the palliative care team by her oncology team in Crumlin. She is undergoing chemotherapy to try to control the spread of the cancer in her little body, and to stabilise the disease as much as we can.

“As a family, we want Fiadh to be able to spend the time she has left, at home with her family and little brother Páidí, whom she adores.

“We have been advised that paediatric home care palliative services have not been available to children in the south-east since 2017, despite previous discussions in the Dáil about the lack of resources in the area. We appeal to you, as her representative, to advocate for Fiadh’s right to end-of-life care at home. We do not want Fiadh to have to spend any unnecessary time in hospital.

“Fiadh has fought this disease so bravely – we are so proud of her but unfortunately, her disease is very aggressive.

“She has undergone multiple major surgeries. Over 120 days of chemotherapy, months in hospital, radiotherapy, intra-operative radiotherapy, 12 months of immunotherapy, two stem-cell transplants and hundreds of blood transfusions, amongst other things. She has had the best medical care available in Ireland and we fundraised and used our own funds to bring her to Memorial Sloan Cancer Centre in New York for surgery and treatment.

“We have tried everything we can to give her the best chance to fight this awful disease but we have run out of options and her little body is tired of fighting. Fiadh deserves the right to spend her last days at home surrounded by those who love her.

“Fiadh does not have access to her right to die at home, solely based on her geographic location. This is a disgrace for the people of the south-east and particularly, the children of the south-east.

“No family should have to fight for this right for their child, no family should have to advocate for their child’s right to die at home, especially at such an emotional time.”

They said that “Fiadh has two aunties who are nurses and three aunties who are doctors, all of whom are willing to care for Fiadh in her final days.

“We will require access to support services but we do need a palliative home care team that would take clinical responsibility for Fiadh’s care.”

When the issue was raised in the Dáil in December junior health minister Mary Butler said no timetable for a paediatric service in the south-east was available but that it would become her top priority.