Worthing couple devastated after baby left permanently sight-impaired

The Worthing couple received the life-changing news that their child Ralph would never have full vision after being diagnosed with retinopathy of prematurity shortly after he was born at 25 weeks by caesarean section.

Retinopathy of prematurity (ROP) is a rare condition where premature birth means blood supply to the retina at the back of the eye fails to develop normally.

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Blood vessels in the inner retina instead grow into other parts of the eye, while the abnormal vessels may in extreme cases cause the entire retina to detach.

Weighing just 970 grams at birth in October 2018, Ralph was transferred to a neonatal intensive care unit at the Royal Sussex County Hospital in Brighton.

His mum Jessica, 22, said her son spent 33 days in intensive care and a further week in the high dependency unit, which included periods of ventilation and oxygen therapy.

“He received specialist care for lung, heart, blood and gastric issues that can affect premature babies and was given antibiotic treatment for sepsis,” she said.

“Five weeks after birth, Ralph was screened for ROP at Brighton.”

Parents Jessica and Mark, who did not want to give their surname, said an ophthalmology report stated there was no ROP in either eye and a screening was scheduled for a fortnight later, by which time Ralph had been transferred to the special baby care unit in Worthing.

The second screening also found no ROP, and another screening was recommended, the couple said.

Ralph was diagnosed with retinopathy of prematurity shortly after he was born at 25 weeks. Credit: Tees Law

“Unlike screening at Brighton, it was a harrowing experience,” Jessica said. “There was some uncertainty about the dilating eye-drop dosage needed and then invasive instruments were used without the use of anaesthetic drops.

“Ralph became very distressed. Afterwards, his eyes looked horrifically sore, a bit like conjunctivitis.”

After a further screening where once again no ROP was found and with growing concerns the couple took their son to the eye casualty unit in Brighton on March 24.

At the unit, the absence of red reflex (which causes red-eye in photos) was confirmed, but lack of access to Worthing Hospital’s notes meant a further examination was needed, they said.

Three days later, Ralph was referred urgently to Great Ormond Street Hospital (GOSH) for a series of tests after an examination by a consultant in paediatric and neuro-ophthalmology.

The tests found a small electro-retinography response in the right eye but none in the left, Ralph's parents said.

It was at this point that Ralph’s parents received the devastating news that he had ROP and his visual prognosis was extremely limited.

“We were told that GOSH would have to operate to save what limited sight they could,” Jessica said.

“Ralph’s left eye was stage 5 ROP inoperable. His right eye was stage 4a ROP and various options were considered for dealing with the detached retina.”

Ralph was given an innovative encircling band to reattach the retina in the right eye.

After their ordeal, Ralph’s parents have pledged to raise awareness of ROP, among medical staff and parents of premature babies.

Janine Collier of Tees Law, acting for the family, said Ralph has been officially registered as severely sight-impaired.

“The Western Sussex Hospitals NHS Foundation Trust (now part of University Hospitals Sussex NHS Foundation Trust) has denied liability and so court proceedings have been issued, citing various failings by Worthing Hospital,” she said.

“My clients sincerely hope that this action will help to raise ROP awareness among medical practitioners and new parents, making early diagnosis and intervention more likely.

“Unfortunately, the trust has consistently asked for extra time to file their defence which is contributing to an already stressful situation for Jessica and her family.”

While a “very happy child”, Ralph also suffers from anxiety and nightmares due to the ordeal, his parents said.