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Brooke and Wil Rees-Webb welcomed their son Gwilym Ioan after a caesarean section in December. He lived just 11 days before dying on Christmas Eve. The family’s experience reflects a broader pattern of challenges faced by bereaved parents in Wales, where access to timely, transparent, and compassionate care remains inconsistent. Source: bbc.co.uk.
What Happened to Gwilym
Gwilym was born healthy. But within days, he showed signs of distress: he was sleepy, hard to feed, and unresponsive to care. These symptoms are serious in newborns, especially when linked to infections or metabolic issues.
Brooke Rees-Webb, who works in the Welsh Parliament for a Plaid Cymru Member of the Senedd, said they trusted medical staff at first. They were told Gwilym would improve with more feeding. But medical records show a serious neonatal infection — one that could have been caught earlier with better monitoring.
No formal follow-up assessments were done. The team did not test for infection or refer to a specialist. This raises questions about how early warnings are handled in neonatal units across Wales.
After Gwilym died, the family was told a post-mortem and inquest would follow. But neither has been completed. No official report has been shared. This absence of investigation is troubling, especially for complex neonatal deaths.
Delays in Accessing Information
Brooke was promised a key contact to answer questions. That person did not appear for at least three months. The family waited months without support.
She said: ‘The information doesn’t come freely, you have to fight for it.’ Many parents report being told they’ll get updates — only to wait months for a reply or get vague answers.
Waiting adds emotional pain. Grieving parents are already traumatized. The lack of communication makes them feel isolated and powerless. As Brooke said: ‘It’s really hard every day to live a normal life, having to wait for emails, phone calls, just any kind of information about why your baby died, while also grieving.’
Parents often feel like they’re not part of the process. They’re not invited to speak or ask questions in real time. This makes the experience feel like a routine task, not a compassionate response to loss.
Systemic Gaps in Bereavement Reviews
Official reviews in Wales rely mostly on clinical notes — lab results, doctor notes, hospital records. These show only one side of what happened.
Georgia Stevenson, head of the Sands and Tommy’s joint policy unit, said: ‘We don’t feel the current reviews really embed parents at the centre of that process.’ Parental experiences — like their child’s behavior or emotional reactions — are left out.
Many parents report being dismissed. One was told: ‘We don’t have time to talk about your concerns.’ Another was told her son was ‘stable’ when he had been showing distress for days. These cases suggest a gap between what staff see and what parents notice.
If parents aren’t included, key details may be missed. A parent might notice a change in feeding or sleep — a sign that a medical staff member overlooks. Including these observations could have led to earlier diagnosis and action.
Wales Faces High Neonatal Death Rates
According to MBRACC-UK data, Wales had the highest neonatal death rate in the UK in 2023 — 1.79 per 1,000 births. This rate is higher than the UK average and places Wales at the top.
By 2024, the rate dropped slightly. While this is positive, it still shows ongoing issues. The improvement may come from better monitoring, but it doesn’t fix root causes like delayed diagnosis or weak clinical protocols.
Stevenson called for the Welsh government to set clear, measurable targets to reduce stillbirths and neonatal deaths. These targets must include both clinical data and parental experiences. This would help assess not just death numbers, but care quality and emotional impact.
She also said reviews should include personal stories — like how a parent felt, what they observed, and how staff responded — to give a fuller picture of what went wrong.
Support Networks Are Overwhelmed
Ruth Mason, a bereavement support volunteer in Merthyr Tydfil, has helped families since 2018 after losing her twin boys. Her work now includes a volunteer group for grieving parents.
She said many parents now turn to her group because they can’t find formal bereavement services. ‘We are also hearing so much about people not receiving timely results of investigations,’ she said. ‘It just adds to people’s trauma — they feel like they are being left behind.’
While some staff, like bereavement midwives, offer good care, their numbers are low. In most health boards, there is only one such midwife — a limited resource for a large region.
Mason believes the lack of consistent support worsens grief. ‘If there’s one thing I’ve learned it’s that compassionate care makes such a difference to families,’ she said. ‘It helps them feel seen, heard, and supported — not just in the moment, but long-term.’
Personal Stories of Trauma and Advocacy
Jaz Roberts from Port Talbot lost her son Wyatt at birth. Seven years later, she still seeks answers. She said she was told during a hospital visit she couldn’t access perinatal mental health services because her baby died.
She said: ‘I was really struggling, I was in shock, distressed. I felt really traumatised.’ This response — denying mental health support after a stillbirth — shows a wider flaw in how bereavement services are built.
Roberts founded Better Maternity Wales to push for better care. She said: ‘The time and energy I put into advocacy is purely the time I’d put into parenting Wyatt if he was here.’ Her work shows how personal loss can lead to systemic change.
She said many parents feel treated as ‘cases’ — not people with real emotional needs. Without trauma-informed care, families are left to manage grief without tools or support.
Current Care Pathways in Wales
The National Bereavement Care Pathway (NBCP) Cymru was launched in June. It gives healthcare staff a national framework for supporting bereaved families. It covers communication, emotional care, and how to respond to parents’ concerns.
Julie Richards, director of the Royal College of Midwives Cymru, said bereavement midwives are now in all health boards. But there’s only one per board — a small, limited resource.
These midwives help parents through the review process and support them when they return for future pregnancies. The grief from losing a child can be deeply re-traumatizing. Midwives help parents process their pain and build resilience.
Government Response and Ongoing Challenges
The Welsh government said it is considering calls for national targets to reduce stillbirths and neonatal deaths. This includes clear goals for reducing neonatal mortality and improving early detection of newborn health issues.
It confirmed the National Bereavement Care Pathways offer a ‘clear national approach’ and are working with health boards, NHS Wales, and Sands Cymru to ensure consistent use across Wales.
Despite these efforts, families still face long waits and inconsistent care. A 2024 report found that families who have lost a child or faced injury are often traumatised by ‘defensive responses’ — such as dismissiveness, lack of empathy, or refusing to talk. These responses limit learning and improvement.
When parents feel ignored, trust in the system drops. This makes real change less likely.
Why This Matters
Every baby loss is a personal tragedy. But when families are denied timely answers, excluded from reviews, or get poor support, the system fails.
Parents aren’t just witnesses — they are key to understanding what went wrong. Their observations and emotions provide vital context that clinical records alone cannot capture. When these voices are left out, reviews remain incomplete and potentially misleading.
Without inclusive, timely, and compassionate processes, similar tragedies may continue. The system must recognize that bereavement is not just a medical event — it is a human experience that deserves dignity, respect, and active inclusion in all decisions.
What to Watch Next
Parents in Wales are pushing for change. The next steps include:
- Implementation of national targets for neonatal and stillbirth reduction, with clear timelines and performance metrics.
- Expansion of bereavement midwives across health boards, with a target of at least one per region, and training in trauma-informed care.
- Formal inclusion of parental voices in official reviews — with structured opportunities to contribute, ask questions, and be heard.
Organisations like Sands and Tommy’s continue to advocate for reform. Their work shows change is possible — but only with sustained pressure, transparency, and a real commitment to listening to those most affected.
For families like the Rees-Webbs, answers are not just about medical facts. They are about dignity, respect, and the right to be heard. When a system fails to meet these basics, it fails not only to heal — it fails to serve.
