Parents in Wales Await Answers Following Neonatal Deaths Amid Calls for Review Reform
Families recount lengthy waits for information and inadequate support after losing babies, highlighting systemic issues in bereavement care and investigation processes.
Brooke and Wil are still seeking answers 10 months after their son Gwilym Ioan died on Christmas Eve, just 11 days after his birth. Medical records indicated Gwilym had a serious neonatal infection, but his parents were repeatedly reassured by healthcare professionals that his difficulties feeding and sleepiness were normal.
"The information doesn't come freely, you have to fight for it," Brooke said, describing the exhausting process of grieving while pursuing details about her son's death. The couple were promised a report in June that has yet to be delivered, and they are also awaiting a post-mortem examination and an inquest. Cwm Taf Morgannwg University Health Board, which cared for Brooke and Gwilym, stated that it would be inappropriate to comment due to the ongoing inquest.
Brooke and Wil's experience echoes broader concerns about the handling of stillbirth and neonatal death reviews in Wales. Georgia Stevenson, head of the Sands and Tommy's joint policy unit, highlighted that Wales had the highest rate of neonatal deaths in the UK in 2023, with 1.79 per 1,000 births. Sands advocates for national targets to reduce such deaths and emphasizes the need to integrate patient and staff experiences into reviews, noting that current processes are heavily influenced by clinical notes, potentially sidelining parents' perspectives.
A report earlier this year into maternity services in Wales found that families experiencing loss or injury were further traumatized by defensive responses and inconsistent processes. Ruth Mason, who supports bereaved parents in south Wales, shared that many families feel they are navigating a lack of appropriate and compassionate bereavement care and significant inconsistency across health boards. "We're also hearing so much about people not receiving timely results of investigations and inquiries into their care and that just adds to people's trauma," she said.
Jaz Roberts, who lost her baby Wyatt to stillbirth seven years ago, founded the charity Better Maternity Wales to support other parents. She described her own experience with the system as "horrendous and heart-breaking" and recounted being denied access to perinatal mental health support after her loss. "The time and energy I put into advocating and campaigning for changes is purely the time and energy I'd put into parenting Wyatt if he was here," Roberts stated.
In response to these challenges, the National Bereavement Care Pathway (NBCP) Cymru was launched in June, offering guidance for healthcare professionals caring for bereaved families. However, Julie Richards, director of the Royal College of Midwives Cymru, noted that the resource of bereavement midwives is limited, with often only one per health board.
The Welsh government has indicated it is considering calls for national targets to reduce stillbirths and neonatal deaths as part of its efforts to improve maternity and neonatal safety. They are working with health boards and Sands Cymru to ensure consistent implementation of the National Bereavement Care Pathways across Wales.