Parents accuse NHS of failures after 19-month-old dies following delayed diagnosis of facial tumour
Mother says clinicians wrongly suspected abuse and referrals were delayed as her daughter’s facial mass grew; two trusts say reviews are under way
A mother has accused hospital staff of negligence after her daughter, Delilah-Rai Reid-Floyd, died on August 10 at 19 months of age following months of delayed diagnosis and changing assessments of a rapidly growing facial mass.
Kayleigh Reid, 27, said she first noticed a pea-sized lump on her daughter’s face while bathing her on January 30 and sought GP advice the next day. She said the infant was referred to Russells Hall Hospital in Dudley for what clinicians described as a possible non-accidental injury, and that hospital staff initially dismissed concerns about the lump and questioned the parents about how the mark had appeared.
Reid said a CT scan was reviewed and the lesion was initially reported as a paranasal cystic lesion. She was told her daughter would be referred to an ear, nose and throat (ENT) specialist and that the family would hear within a week, but the referral was not made, she said. An ENT appointment did not take place until April, by which time the mass had continued to enlarge, according to the family.
Delilah-Rai was then referred to Birmingham Children’s Hospital. Reid said she was told there would be a three-month wait for an appointment, but after she sent photographs showing rapid growth the hospital arranged to see the family two days later. Scans were performed on May 9 and the family was seen on June 18, when clinicians decided a biopsy was required and scheduled the procedure for July 16.
Throughout spring and summer the mass continued to change and distort Delilah-Rai’s face, Reid said. On July 30, the family was told the lesion was desmoid fibromatosis, a non-cancerous tumour, and surgery was booked for August 7. Medical notes provided by the family say surgery would have involved removing and reconstructing portions of the child’s upper left jaw, nasal bones, cheekbones and the orbital floor of her left eye.
On August 5, Reid said, the planned surgery was cancelled after clinicians determined the lesion was in fact a soft tissue cancer and recommended chemotherapy first; it was subsequently judged that surgery would be too risky. Delilah-Rai died five days later on August 10.
Reid, who has four other children, said she believes earlier and different action by health services might have offered her daughter a better chance of survival and that she is pursuing legal action against Russells Hall Hospital and is considering action against the Birmingham trust.
A GoFundMe page has been started to support the family.
Representatives of both trusts involved issued statements expressing condolences and saying they were working with the family. A Birmingham Women’s and Children’s NHS Foundation Trust spokesperson said: "The trust would like to offer Delilah-Rai's family our deepest sympathies for the loss of their daughter. We are working with the family to provide them support and address their concerns. An internal review is now under way. The findings will be shared with the family and we will put any learning into place."
Diane Wale, group chief executive at The Dudley Group NHS Foundation Trust, said on behalf of the trust: "I would like to extend our sincere condolences to Delilah's family. We will look into the issues raised and speak with Delilah's family to better understand the circumstances surrounding this sad loss."
Medical records and family accounts indicate a sequence of changing diagnoses and multiple delays in referral and investigation over a period of more than six months. The case highlights the challenges clinicians and families can face when evaluating facial masses in young children, where presentations can be rare and progressions rapid. Desmoid tumours are generally classed as non-metastasising but locally aggressive, while the family was later told the lesion was a form of soft tissue cancer; the trusts have not published detailed clinical findings.
The trusts said their internal reviews will examine the timeline of care, the nature of diagnostic decisions and the communication between services and with the family. Any findings that emerge from those reviews and the family’s ongoing legal concerns will determine whether changes to practice or further investigation are required.
The family’s complaint underscores wider tensions in paediatric pathways when rapid assessment and specialist referral are needed. NHS systems expressly aim to prioritise urgent paediatric referrals, but waiting times and the need for multi-specialist input can complicate timely treatment. The trusts did not provide additional clinical details or timelines beyond the statements that reviews are under way and that they will work with the family.
Reid said she hopes raising awareness of her daughter’s case will prompt better recognition of serious conditions in young children and "hold the NHS accountable for their part they played" in her daughter's care. The internal reviews announced by the two trusts are ongoing and the family has been notified that findings will be shared with them when available.