NHS Lothian legal threat after 'doctors miss' girl's deafness virus at inquiry-hit board

The couple say doctors at St John’s hospital in Livingston should have recognised that their baby was exhibiting symptoms of CMV, including low birth weight and a rash.

Congenital CMV infection can be diagnosed by testing a newborn baby’s saliva, urine or blood and samples must be collected within two to three weeks.

The family say the infection caused Matilda’s hearing to get progressively worse and it was not until they moved temporarily from Bathgate to Stirling that hearing checks were carried out, when she was three, despite them raising concerns with health visitors at NHS Lothian.

By the time it was diagnosed, she was almost completely deaf in one ear and had limited hearing in the other.

The couple say they were told by doctors that it would have been too late to fit Cochlear implants - which she received - had she been diagnosed just six months later.

It comes days after NHS Lothian apologised for “horrendous” failings after an independent review found that deaf children missed out on vital cochlear implant surgery because of mistakes and delays in diagnosis.

READ MORE: Humza Yousaf says families were failed by health board's 'catalogue of errors' 

The health board apologised to the families involved as the report set out repeated errors in identifying hearing loss and admitted the delays would have long-term consequences for the speech and language development of the children involved.

Mr Hunter says his wife’s pregnancy was progressing as normal until the last eight or nine weeks when it was discovered the baby had stopped growing. She was closely monitored and the pregnancy was induced.

Matilda passed the clap test that is used to check hearing when she was born but Mr Hunter, 40, says there were “a few things that weren’t quite right” and doctors were not able to pinpoint what the problem was.

The couple brought their newborn home and as the months went on the baby seemed to be developing normally.

However they became concerned that she was slow to start talking.

“The longer that went on, the more concerned we became,” said Mr Hunter.

READ MORE: Susan Daniels: Deaf children were betrayed by repeated failings at NHS Lothian 

“My wife was asking the health visitors, "what’s wrong?" and they were saying she’s fine, she’s just a late developer and perhaps her brother and sister are doing the talking for her.”

Mr Hunter says it was only after they moved to Stirling, temporarily, when Matilda was three that doctors there, suggested a hearing test.

“They knew instantly that she wasn’t right.

“It turns out that an infection she had at birth wasn’t identified and had led to her progressive hearing loss over time.

“The found out that she was practically completely deaf in one ear and she was quite deaf in the other. They gave her hearing aids and when we moved back to Bathgate, she was fitted for Cochlear implants.

“They told us if it had been six months later, they wouldn’t have given her the operation for the implants because they considered her too old.”

He said there was “absolutely no doubt” that her hearing deteriorated in the period that his daughter was waiting for surgery to implant the Cochlea devices, which stimulate the hearing nerve directly and give a sensation of sound to profoundly deaf children.

“Once we found out she was deaf we could pinpoint occasions where her hearing had got worse,” said Mr Hunter.

“It was just going to get worse and worse until she was completely deaf , that’s what the virus does.”

Mr Hunter said it was upsetting to learn that the infection could have been treated with drugs if it had been detected using a blood sample when Matilda was born.

He said: “The symptoms she had all pointed to CMV and they should have known that. 

“Then she could have got anti-viral drugs. 

READ MORE: NHS introduces transparent masks to enable lip reading 

“Reducing the impact of the virus is one thing but it’s the fact that she wasn’t diagnosed until so late and that has had huge repercussions for how she develops.

The hearing implants will remain in place for the rest of Matilda’s life but the couple have some concerns that her language skills could be affected, long term.

“Experts say there is a language window up until seven and beyond that children stop absorbing languages easily so we just don’t know. 

“We always say she’s doing really well but I’m trying to be realistic - her speech isn’t perfect, her language isn’t perfect.”

A spokeswoman for NHS said the child passed their new-born hearing screen meaning they would not be referred for further services as per guidelines.

The couple, who have three other children; Alannah, 15, Zachary, 13 and three-year-old Grayson, are considering legal action against the health board.

“I think we have to for Matilda’s sake”, said Mr Hunter, who works as a freelance computer programmer.

He said he was “gobsmacked” by the findings of an inquiry which showed the average age of diagnosis of hearing loss amongst children at NHS Lothian between 2009 and 2018 was 1,653 days, or 4.5 years old, compared with 109 days in England.

The independent investigation of paediatric audiology service uncovered “significant failures” over a nine-year period in 14% of cases after sampling more than 1,000 patient records, in particular amongst the under fives.

The report found that 12 children who were eligible for cochlear implants faced significant delays, to the extent that five missed out on getting them altogether; 49 children had a delayed identification of hearing loss or the fitting of their hearing aid; and 30 were not offered the correct hearing aids.

Following the report, the National Deaf Children’s Society called for an urgent country-wide review, warning that thousands more children treated at NHS Lothian could have been affected.