The system that failed our child

ON March 3, at Portland Hospital in London, two-year-old Hannah White underwent surgery for the fitting of a small electronic device that provides a sense of sound to someone who is profoundly deaf.

It was two years after concerns about her hearing were first raised and in the wake of a number of visits to the Cork Audiology Service (CAS) where Hannah was diagnosed with mild hearing loss, not affecting her speech.

Hannah, from Mallow, Co Cork, was 12 weeks old when possible hearing difficulties first emerged in March 2007 during a visit to the family doctor. She was referred for further assessment to St Finbarr’s Hospital in Cork and subsequently to the CAS. Her mother, Monica, inquired about private treatment but was assured the CAS was a centre of excellence. She was assessed at the service in November 2007.

“She was examined by two audiologists, on two separate occasions, and had three assessments in total. The written diagnosis each time was mild hearing loss, not affecting speech. It was put down to fluid in the ear,” Monica said.

Not happy with the diagnosis, Monica and Mark, Hannah’s father, sought a second opinion from a private specialist. “He confirmed the CAS diagnosis, but all he did was read their report. He did not assess Hannah himself,” Mark said.

Another appointment followed in the CAS and this time the decision was taken to refer Hannah for further assessment — to the same consultant they had paid to see her child. He fitted her with grommets in September 2008, but the operation did not improve her hearing. At a subsequent visit to her GP, Hannah was referred to a private audiology service in November 2008.

The audiologist who examined Hannah had previously assessed her in the public system. This time the diagnosis confirmed significant hearing loss in the right ear, Mark said. Hannah was referred to another ear, nose and throat specialist who examined her within a week and diagnosed her with at least severe hearing loss. Further tests were carried out and she was diagnosed as profoundly deaf.

In December 2008, Hannah was referred to Beaumont Hospital and was given a surgery date of September 2009 for a cochlear implant. At that point, Monica took matters into her own hands.

“At this stage, she was two years in the system, and nothing had been done. All the literature says lack of early intervention compounds the problem day by day and worsens the outcome. I began phoning hospitals in Britain and Northern Ireland to see if I could get an earlier surgery date,” she said.

Beaumont said they would look at the possibility of an earlier date of May 2009, but with nothing in writing, Hannah’s parents booked her into Portland Hospital. The surgeon was booked, a date for surgery was set and flights and accommodation were organised.

Hannah was fitted with a cochlear implant on March 3 after a week of assessments in London. Mark said her assessors in London believed the hearing aids the CAS had fitted Hannah with were not calibrated properly.

Hannah is now at home, recuperating, but will return to Portland on March 23, for a month-long course of intensive rehabilitation. She will be accompanied by her father who is taking parental leave. Hannah will then have three-monthly assessments at Portland Hospital for up to a year.

The cost of Hannah’s operation was £56,000, or e60,797, raised by family and friends. Her new hearing aid cost £3,000(e3,357). Add to this her parents’ transport and accommodation costs. But her parents’ main concern is not the cost.

“We do not want anyone else to go through what we went through. We feel a moral obligation to speak out now.

“We find it interesting that the buck has stopped with one person in the CAS and that only her patients are being recalled when Hannah was assessed by more than her,” Monica said.

Hannah is not part of the HSE recall because it relates to clients seen solely by the woman at the centre of the review.

A statement from the HSE said it was aware of the case “and acknowledge the difficulties they have experienced”.

The statement said while the HSE was “not able to discuss details of our clients’ treatment, however, it is fair to say, that cases of this level of complexity are extremely rare”. It said the HSE regretted the delays that occurred in Hannah’s case and that Hannah was correctly diagnosed by a clinician presently working in the CAS. However, it was at this clinician’s private audiology service that Hannah was diagnosed.

The HSE said Hannah’s case “represents a very specific and individual set of circumstances”.

The Whites believe that it is the system that needs to be reviewed and that there are more issues that need to be addressed than the work of one audiologist.

“Hannah was failed on three separate occasions. Firstly at birth she was denied neonatal screening. Secondly she was failed by being consistently misdiagnosed and finally she was failed by being offered inadequate treatment,” Mark said.