Sarah Nugent’s daughter Isabella lived for 54 days after birth. She had been born with a peroximosal disorder, a genetic, degenerative condition.
Sarah of Every Life Counts said her heart broke when Isabella died but she never received any counselling. She said the loss of a baby was always heart-breaking but such losses are often not recognised.
“Her life was important and precious and her passing was almost unbearable but sometimes that’s not recognised, nor is the fact that parents need professional support and bereavement counselling after your baby dies,” Sarah said.
Sarah said in her experience there was no system in place in hospitals when Isabella was born in 2014 to provide “any kind of support” to bereaved parents.
She told RTE’s Morning Ireland that Isabella was in hospital for her whole life. Sarah said it was difficult for family members to visit Isabella and “even getting to hold her very much depended on the confidence of the nurse that was working at the time.”
Sarah said the newly launched HSE National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death should lead to improvements in the supports grieving parents receive. Under the standards all maternity hospitals will set up or further develop bereavement specialist teams to support grieving parents and families.
Sarah said the “compassion and the thought” that has gone into the new guidelines has been “fantastic.”
Dr Keelin O’Donoghue, Consultant Obstetrician and Senior Lecturer Cork University Maternity Hospitals said: “The publication of these standards marks another significant step forward for the health services and is a direct expression of our commitment to compassionate care for patients. All Maternity Hospitals/Units will now establish or develop further Bereavement Specialist Teams to assist and support parents, families and professionals dealing with pregnancy loss.
“These teams will comprise staff members who have undertaken specialist and extensive education in bereavement care and will include a dedicated clinical midwife specialist in bereavement care for each maternity unit. They will be supported in their work by staff from other disciplines including obstetricians, paediatricians, neonatologists, chaplains, social workers and palliative care teams. The new standards also acknowledge the impact of pregnancy loss and perinatal death on staff and the importance of having formal structures in place to support staff. ”
Sarah said: “You can feel the love, compassion and the thought. The guidelines have not just been plucked out of the sky. It’s clear that everything that has gone into them is evidence based; in consultation with women who have lost babies and in consultation with frontline staff.”
Health Minister Simon Harris who launched the standards said they clearly define the care parents and families can expect to receive following a pregnancy loss or perinatal death. The standards will be implemented and applied across the health service in all appropriate hospitals and settings.
Minister Harris said, “This marks a new beginning for bereavement care services for parents who have the devastating experience of a pregnancy loss or perinatal death. I am pleased that the standards will ensure that clinical and counselling services will be in place to support women and their families in all pregnancy loss situations, from early pregnancy loss to perinatal death, as well as situations where there is a diagnosis of a life-limiting or fatal foetal anomaly.
“I am grateful to the many families who generously shared their experiences during the strategy consultation process and offered suggestions on how care could be improved. I trust that their contribution, the work of the Bereavement Care Standards Development Group and the group now charged with implementing these standards will ensure that all families who have the terrible experience of a pregnancy-related bereavement will receive the care and compassion they need.”
The standards have been developed in response to recommendations in both the HSE’s Investigation report in to the death of Savita Halappanavar and the report of Dr. Peter Boylan following his review of maternity cases at Portlaoise Hospital.
The HSE acknowledged the work of the expert group who developed the standards. This group included representatives from obstetrics, midwifery, psychiatry, paediatrics, social work, chaplaincy and the Irish Hospice Foundation.
Their work was informed by a national audit of bereavement services in maternity units, an extensive public consultation process that yielded 164 submissions, consultation with practitioners and voluntary support organisations that support parents and families as well as the development of the new National Maternity Strategy and the draft HIQA Maternity Standards.
IHF Head of Healthcare Programmes Marie Lynch commented: “ Here at The IHF we work passionately to improve the quality of available bereavement care and these progressive standards will carefully support improvements from the perspective of baby and parents, staff, hospital and bereavement care.”
The standards are built around four central themes
Bereavement Care which is central to the mission of the hospital and is offered in accordance with the religious, secular, ethnic, social and cultural values of the parents
The Hospital to ensure a system is in place to provide bereavement care and end of life care for babies that is central to the mission of the hospital and is organised around the needs of babies and their families
The Baby and Parents to ensure each baby/family receives high quality palliative and end of life care appropriate to his/her needs and to the wishes of his/her parents
The Staff: so that all hospital staff have access to training education and training opportunities in the delivery of compassionate bereavement and end of life care in accordance with their roles and responsibilities