Our baby died on Christmas Eve and we're still waiting for answers

But Gwilym died on Christmas Eve at just 11 days old. And, as the couple from Pontypridd, Rhondda Cynon Taf, prepare to mark his first birthday without him, they are still waiting for answers about his unexplained death.

Baby loss charities Sands and Tommy's are calling on the Welsh government to ensure bereaved parents are supported to contribute to the review of deaths.

The government said it had "committed to ensuring every bereaved parent and family has access to high-quality, consistent and compassionate care".

Baby Gwilym sleeping in his crib. He's a newborn and wearing a baby blue suit. He's wrapped in a blue blanket and lying on a floral sheet with a soft toy at the top of the photograph.

Brooke and Wil welcomed Gwilym Ioan after a caesarean section last December.

"Ultimately we trusted the health professionals and wanted to make sure that Gwilym was here safe," said Brooke, 28, who works for the Welsh Parliament for a Plaid Cymru Member of the Senedd alongside her husband.

"During that first week he was very sleepy, didn't wake very often and was very difficult to feed."

Brooke said they raised those concerns with multiple health professionals but were reassured that everything was normal and that "he would get better if you just feed him more".

But his medical records showed he had a "serious neonatal infection", she said.

Now, 10 months on, the couple are still waiting for answers about why their baby passed away and shared their story via BBC Your Voice.

"We've had no information from the health boards," said Brooke, adding that a report promised in June still has not been presented to them.

Brooke and Wil are also waiting for a post-mortem examination and an inquest into Gwilym's death.

Last year the Ministry of Justice said there were significant challenges affecting post-mortem pathology services and that it was working urgently to find a long-term solution to improve the service.

Brooke said grieving her son and missing out on milestones was particularly difficult and exhausting when you're seeking answers.

"The information doesn't come freely, you have to fight for it," she said.

"We were told that we'd have a key contact and that someone would come out and take our questions or our concerns, but that didn't happen for at least three months, so we had to kind of fight for that to be included.

"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."

Brooke and Gwilym were cared for by Cwm Taf Morgannwg University Health Board who said their "thoughts and condolences" remained with the family.

They added: "As there is an open inquest into this case, it would not be appropriate for the health board to comment while proceedings are ongoing."

Georgia has a short ginger bob and is wearing a blue and white checked shirt with a bow on the front. She is pictured on an orange sofa with screens in the distance.

Wales had the highest rate of neonatal deaths in the UK in 2023 - 1.79 per 1000 births - according to Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRACC-UK).

"We would like the Welsh government to set a target to reduce stillbirth, neonatal deaths, preterm births", said Georgia Stevenson, head of the Sands and Tommy's joint policy unit.

To "really understand what's going on", Sands is calling for the data around neonatal and stillborn deaths to be considered alongside "patient and staff experience".

Stevenson added that reviews were "heavily influenced by clinical notes which is one account of what happened", but believes parents' "voices should be placed on an equal footing".

"We don't feel the current reviews really embed parents at the centre of that process," she said.

"Too often they are not able, or don't feel able, to participate in that process or they just don't feel like their views are being properly represented and that can be retraumatising for the parents who have already lost their baby."

A report into maternity services in Wales this year found families who had experienced loss or serious injury were further traumatised by "defensive responses" and inconsistent processes, which limit the capacity to learn and improve.

Ruth has short blonde and ginger hair and is wearing a stripy black, brown and white top. She's sat on a sofa and is smiling at the camera.

For the last three years, Ruth Mason has helped bereaved parents in south Wales to navigate their loss through a support group in Merthyr Tydfil.

She knows all too well how crucial a support network is after her twin boys, George and Henry, were stillborn in 2018.

In her groups she said she encountered "desperate" parents navigating a "lack of appropriate and compassionate bereavement care" and a "huge lack of consistency" across health boards.

"We are also seeing families accessing us, our group as volunteers, because there is nothing else for them," she said.

"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 it was "worrying and it's upsetting" that bereaved parents are still going through what she went through eight years ago.

Mason recognised the work being done by healthcare staff, such as bereavement midwives, in Wales but said that "where it is good, there's not enough of it".

She said the qualified bereavement councillor she was supported by during her loss "saved her life".

"If there's one thing I've learned it's that compassionate care makes such a difference to families."

Jaz has long dark hair and is wearing a brown top with short sleeves. She's stood up against a sign for her charity Better Maternity Wales. She's pictured here at an event in the Senedd building in Cardiff Bay. She's smiling at the camera.

There were 3.9 stillbirths per 1,000 live births and stillbirths in England and Wales in 2024, according to the ONS.

Seven years after her baby Wyatt was stillborn, Jaz Roberts from Port Talbot is still searching for answers about his death.

She said she reflected on the years of litigation as "horrendous and heart-breaking".

The 33-year-old added that she felt some treatment after Wyatt's death was "inhumane", reflecting on when she asked for mental health support under Swansea Bay health board's care.

"I was really struggling, I was in shock, I felt really traumatised, distressed," she said.

"I was told you can't access the perinatal mental health team because your baby's died."

Jaz's experiences inspired her to set up her charity Better Maternity Wales.

She said she wanted to use her voice to support parents navigating loss because "their capacity just deteriorates", because it is "exhausting and distressing to be reliving things and having to find a fight".

"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," she said.

Swansea Bay health board said they were "very sorry to hear of Jazzmin's concerns regarding the standard of care she received", adding that "would welcome the opportunity to discuss these concerns directly with her" in future.

In June, the National Bereavement Care Pathway (NBCP) Cymru was launched providing healthcare professionals in Wales with nationally recognised practical guidance when caring for a bereaved family.

"We've got bereavement midwives working across Wales but often there is only one per health board," said Julie Richards, director of the Royal College of Midwives Cymru.

"It's a very small, finite resource for what's needed at the moment."

Julie said that bereavement midwives offered "good, compassionate care" for parents going through the review process, as well as those who return for subsequent pregnancies which can often be traumatising.

The Welsh government said it was considering the call for national targets to reduce stillbirths and neonatal deaths as part of "wider work to improve maternity and neonatal safety and outcomes".

"Our National Bereavement Care Pathways provide a clear national approach to the care and support families should receive following pregnancy and baby loss, and we are continuing to work with health boards, NHS Wales and Sands Cymru to support their consistent implementation across Wales," it said.

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Original source Our baby died on Christmas Eve and we're still waiting for answers

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