A mother whose toddler suffered permanent brain damage after months of being told 'nothing was wrong' has welcomed a damning independent review into NHS maternity care but warns that real change will only come when doctors start listening to parents.
Ella Wilson, 23, spent more than a year pleading with healthcare professionals to investigate her serious developmental and physical concerns about her son, Luke Clarke. The review, led by Baroness Valerie Amos and published on Tuesday, June 30, concluded that a fragmented, overly complex NHS system has normalised poor care, with mothers routinely 'not listened to, heard or believed.'
Drawing on evidence from thousands of families and NHS staff, Baroness Amos found that mothers raising alarms were systematically dismissed, with some told their experiences were 'just one of those things.'
Mother's year-long fight dismissed by doctors
Ella told the Mirror: 'That's exactly how I felt. I raised concerns for over a year and they didn't take it further. A male doctor turned around and said the reason he was right was because he'd been in the job for so many years, insisting Luke was fine and there was nothing wrong with him.'
'I said to him, "I will find out what's wrong with him and I will come back and tell you."'
Luke, now nearly two years old, was eventually diagnosed with periventricular leukomalacia (PVL) — a permanent, irreversible brain injury that causes developmental delays, feeding difficulties, and can lead to cerebral palsy. The life-changing diagnosis came during a four-minute phone call following an MRI scan, after months of pushing for answers.
Missed opportunities for early intervention
Ella believes doctors failed her son from when he was just months old, dismissing repeated hospital visits for breathing problems, feeding difficulties, and delayed development. She remains convinced that earlier intervention could have fundamentally changed Luke's quality of life.
'When I had first had concerns, he was only a couple of months old. His eligibility for certain therapies depends on his age,' she said. 'Because his condition wasn't picked up until he was 13 or 14 months old, he missed out on help and therapy that he could have had a lot sooner.'
'I was made out to be some insane mum. Now look at him — he still can't speak and he's never eaten a whole meal.'
Luke continues to survive on a milk diet because he struggles with solid food. He is under the care of physiotherapists, speech and language therapists, and dietitians, while doctors monitor him for possible cerebral palsy.
Systemic failures and age bias
Ella believes one of the biggest changes needed is for medical professionals to properly investigate concerns rather than dismiss parents based on appearances. 'When babies are having bottles and wet nappies, that doesn't mean they are okay,' she said. 'From the beginning I wasn't talking about a cold or a chest infection — I knew something serious was wrong. They need to take us seriously.'
She fears being a young mother worked against her, with age bias playing a factor. 'I'm only 23 now — I was 22 at the time. They were looking at me like I didn't know. Because they had qualifications, my opinion didn't matter.'
'I was looking at my son every day. I knew something was wrong.'
Ella also believes doctors ignored Luke's complex birth history. She had suffered a placental abruption during pregnancy — a well-recognised risk factor for PVL. She later discovered references to suspected neonatal sepsis in his medical records that were never explained to her at the time.
Ongoing struggles and calls for change
Even after Luke's diagnosis, the battle has continued. Referrals have been refused or delayed by months, prompting her to independently research incurable brain injury. 'I've had to do my own research,' she said. 'At the follow-up they just gave me a website to read about PVL.'
The Amos review has recommended sweeping national overhauls, including the appointment of a UK independent Maternity Commissioner to oversee improvements and create a national maternity action plan, due to be published in December. Ministers have accepted all recommendations.
However, many bereaved families argue the review does not go far enough to explain why avoidable infant and maternal deaths continue, renewing calls for a full statutory public inquiry.
For Ella, the priority is a shift towards transparency and better communication between the NHS and parents. 'When a mum tells you something isn't right, listen,' she said. 'That's my son's life they've neglected. Parents know their own children better than anyone, and if someone had listened sooner, Luke could have had the support he needed much earlier.'
An NHS Greater Manchester spokesperson said: 'We are sorry to hear how distressing this has been for Ella, Luke and their family. Receiving news of a serious diagnosis about your child is incredibly difficult. While we cannot comment on individual cases without reviewing the full details, we would encourage Ella to contact the Patient Advice and Liaison Service so concerns can be investigated and feedback shared with clinical teams.' The spokesperson added that the organisation would welcome the opportunity to review Ella's concerns to ensure the family receives appropriate care and identify any lessons that could improve services in the future.
