17/10/2025
“Our decision to join the Generation Study has changed Freddie’s life phenomenally. We were told that the first six months is vital in diagnosing and treating the condition. There’s no telling at what point it would have been discovered if we hadn’t taken part and what might have happened."
Back in December Jessop Wing Maternity launched as a recruiting site for the Generation study, led by Genomics England in partnership with NHS England.
Vicky and Joe Underhay, whose baby Freddie was found to have a rare eye cancer and whose sight is now expected to be saved, are one of the first families to benefit.
Freddie, who had passed all his eye tests in hospital, was diagnosed with a rare and aggressive form of eye cancer known as retinoblastoma just four weeks after he was born in April.
Thanks to the Generation study - which uses whole genome (DNA) sequencing to screen 100,000 newborns and look for more than 200 rare genetic conditions - Freddie's diagnosis of hereditary retinoblastoma, caused by a change in his RB1 gene, was picked up much earlier.
Within four days of finding the genetic abnormality Freddie was seen by experts at Birmingham Children’s Hospital, where a tumour was found.
Freddie was given a combination of laser treatment and chemotherapy.
Now doctors are optimistic that this early detection could be key to preserving his eyesight.
Around 44 children are diagnosed with retinoblastoma in the UK every year. However, when there is no known family history, diagnosis often comes later, once symptoms have progressed.
Mum Vicky said: “There were no signs that anything was wrong. He was a normal little baby, so the results came totally out of the blue."
“When you sign up to research like this, you think it will never be you. But if we had thought ‘ignorance is bliss’ then the cancer would have spread down his optic nerve and into his body. We’re hopeful that this kind of testing will be readily available to any parent who wants it for their child in the future," Vicky said.
The Generation study is running at 51 hospitals across England, including Jessop Wing.
Well done to our midwives and ! 💙