A grieving mother hopes an upcoming review into maternity care will provide answers regarding the death of her baby son, as the investigation team prepares to meet with affected families for the first time.

The probe into maternity and neonatal services at University Hospitals Sussex NHS Foundation Trust (UHSussex) is holding sessions with families on September 5, inviting those impacted to assist in guiding the inquiry.

Campaigner Beth Cooper, whose family was among those affected who pushed for the review, described the upcoming meeting as a "massive" moment, urging any further parents who faced care issues at the trust to speak out.

The 31-year-old said: “I think if you feel like anything in your gut wasn’t right, or you feel you’re still thinking about and worried about, it’s important that you talk about it and you feel safe to do so.”

“You might get some answers that you needed to move forward. And also, it helps lots of other families in the future.”

The former neonatal nursery nurse has post-traumatic stress disorder from her ordeal and has not been able to return to her job at a special care baby unit at the Princess Royal Hospital in Haywards Heath, West Sussex, since the death of her son Felix in December 2022 at the same hospital.

She had gone into hospital four days in a row in the lead up to Felix’s death at 34 weeks old, concerned about his change in movement as he was a really “active” baby.

But she said she felt treated like an “anxious first time mum”.

On the fourth day she went back to the hospital on Christmas Eve knowing “something really bad was wrong” and was told that he had died.

Ms Cooper gave birth to him via C-section on Christmas Day in what she described as probably the “loneliest moment of my entire life”.

No doctor came to see her in the hospital for four days after she gave birth, she added, so she was there with Felix “not having a clue what had happened or what was going on”.

“It almost felt like because he passed away he didn’t really matter, and it didn’t really matter whether I got an instant debrief,” she said.

She stayed in hospital longer to spend time with Felix to make memories, hold him and spend time with him with her partner Tom Coxhead.

She said: “I feel like he lost a chance to share how wonderful and brilliant I know he would have been.

“I want him to have a legacy so that he has helped change the future for other families.”

In the aftermath Ms Cooper also described the difficulty of navigating the systems for answers.

“I think there needs to be so much work in communications specifically for that trust, on how they talk to you and when they talk to you. It’s just so important,” she said.

A spokeswoman for UHSussex said the death of a baby is one of the “most devastating experiences” any family can face as the trust offered “our deepest condolences” to Ms Cooper and her loved ones.

“We understand that how families are listened to, communicated with and supported following a bereavement is profoundly important and we are sorry when anyone feels unheard or unsupported at such a difficult time,” the spokeswoman said.

“Our priority is to provide safe, compassionate care and to ensure families are treated with openness, respect, and empathy when concerns are raised.”

The trust added it remains committed to listening, learning and making improvements needed in order to be able to “provide the safest and best possible care.”

The Government announced the maternity review into University Hospitals Sussex NHS Foundation Trust which will look at cases dating back to 2018.

Senior midwife and investigator Donna Ockenden was announced in April this year to lead the opt-out review which is expected to look at more than 1,000 cases.

Of the review, Ms Cooper said: “I think hopefully the inquiry will kind of shine light on exactly the scale of what’s happening.

“On a personal side, I’d like to have my questions answered and looked into.

“I want to hear the honest and straightforward truth, and whatever that is.”

As chairwoman of the independent review, Ms Ockenden will have the power to consider cases from before 2018, and cases where women believe they meet the criteria of severe harm but have incomplete or missing records.

On September 5, families affected by their maternity or neonatal care are invited to meet Ms Ockenden and the review team in Brighton to hear information, ask answers about the probe and contribute to the terms of reference yet to be established.

The terms of reference will decide the criteria for family inclusion.

Ms Ockenden said: “Families are at the heart of the review therefore it is essential that we engage with families at this early stage to discuss and shape the Review’s Terms of Reference (ToR).

“To ensure that the criteria underpinning the review is reflective of the local populations’ needs, we are working with families to incorporate their valued feedback into the ToR in a trauma-informed way.

“The review team are here to listen, and act on what families tell us.”

Chief executive of the UHSussex, Dr Andy Heeps, said the trust welcomes the review and remains committed to “fully supporting the process so families can get the answers they need and we take an possible opportunity to learn and improve”.

He added: “Our thoughts remain first and foremost with the families whose babies have died or who have suffered harm when receiving care in our hospitals.

“Our overriding priority is always to provide the safest possible care for mothers and babies – that is why our maternity teams have implemented many positive changes in recent years, and why we will work with the review team to find new ways of making our services better, and safer, still.”