Susan Cacciacarro was almost 37 weeks pregnant with her daughter Chiara when she woke up one morning in 2021, unable to feel her baby kicking.

"My belly just didn't feel right," she said. "I didn't feel any movements."

Chiara, her first child, had been diagnosed with a hole in her heart during a 20-week scan. Since then, Cacciacarro's pregnancy had been classed as high risk and the growth of her baby had been regularly monitored in hospital.

But when a 34-week scan revealed Chiara had lost weight over the previous two weeks, maternity staff at Worthing hospital in Sussex did not make a plan to expedite her birth, which was planned to take place at 39 weeks.

Staff were unable to find the baby's heartbeat and Chiara was delivered stillborn. "I've never felt so devastated and so crushed," Cacciacarro said. "Your world turns upside down and suddenly it's black."

She is among the bereaved parents who will give evidence at a major independent review into maternity and neonatal services in Sussex, led by the senior midwife Donna Ockenden.

The review launched on Saturday with a public meeting in Brighton after months of campaigning by bereaved Sussex families. In February, a joint investigation between the New Statesman and the BBC revealed the deaths of at least 55 babies might have been avoidable if they and their mothers had received better care from University hospitals Sussex.

Ockenden, an expert on maternity safety, led the landmark review into maternity care at Shrewsbury and Telford and another into maternity services at Nottingham University hospitals NHS trust. She is also chairing a review into maternity and neonatal services at two Leeds hospitals.

At the meeting on Saturday, Ockenden discussed the review's terms of reference with the families who will be most affected by it. "We need to get the finer details right to make sure that no family is left behind," said Cacciacarro, who is now a mother of two. "I felt robbed when we lost Chiara … I'm hoping this review will provide answers to all harmed and bereaved families."

As well as accountability and transparency, she said what was most important to the families was that the review brought about an improvement in the safety of maternity care services. "We definitely don't want other families to go through this."

When her appointment was announced, Ockenden said it was an honour to be asked to chair the review, which is expected to investigate more than 1,000 maternity and neonatal cases dating back to 2018.

"I am absolutely aware of the responsibility I have to the families and babies across Sussex," she said. "My priority will be to listen carefully to harmed and bereaved families and to engage comprehensively across communities and with staff 'on the ground' here in Sussex.

"We will proactively reach out to ensure that the voices of seldom-heard families are heard through this review. It is vital that the scope of the review now reflects the experiences of families and enables a thorough and meaningful examination of care, so that improvements can be made as the review progresses."

The bereaved campaigners, who are members of the Truth for Our Babies group (TFOB), are urging other affected families to come forward and participate in the review.

Dr Andy Heeps, the chief executive of University hospitals Sussex, said: "Our thoughts remain first and foremost with the families whose babies have died or who have suffered harm when receiving care in our hospitals.

"We welcome Donna Ockenden's review and remain committed to fully supporting the process so families can get the answers they need, and we take any possible opportunity to learn and improve. 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."

A Department of Health and Social Care spokesperson said: "Our thoughts and sympathy are with Susan [Cacciacarro] and all women and families who were failed by maternity services in Sussex.

"Through the national maternity and neonatal taskforce, increased investment in maternity safety, and the wider reforms following the previous Ockenden and Amos reviews, we are working to ensure families receive safer, more compassionate and more consistent care in every part of the NHS."