Gráinne has to endure a cruel waiting game
on 14/01/2013 00:00:00
During these moments, she experiences a mild sense of fear, before losing awareness. Those who have observed her say she goes into behavourial arrest (temporary total body-arrest of movement) and remains mute with eyes open.
She may then turn her head from side to side. She may exhibit rubbing movements of her fingers of both hands. She may perform some act unconsciously. She may or may not tense up briefly. She becomes flushed.
These complex partial seizures last for a minute or so. Afterwards, Gráinne is mildly confused and has a headache.
This is how Gráinne's behaviour was described by her consultant neurologist, Daniel Costello, in an epilepsy conference held to discuss the unique clinical complexity of Gráinne's case.
The conference, held at Cork University Hospital in Sept 2010, was attended by heavyweights in the world of neurology. They heard that Gráinne had been born full-term in Denver, Colorado, that her mother's pregnancy had been unremarkable, that she came in at a respectable birth weight of 6lbs and 5oz, and that, in terms of perinatal complications, there were none.
Her developmental milestones were obtained normally, although her eyes were not totally aligned. She was subsequently deemed blind in both. She was the second child born to the O'Connors: Their first son, Kieran, now aged 31, is severely mentally handicapped, has problems with his eyes, and also suffers from epilepsy. His parents had genetic testing in the US after he was born and were told they had a one in a million chance of a second child with visual impairment, prone to seizures. More recent tests carried out here last year showed the chance was actually one in two.
Despite Gráinne's impediments she reached her motor and language milestones and sat and passed her Leaving Certificate. She has undertaken courses in independent living, which she tried for while, but now lives with her parents at home in Shanagarry, near Midleton, in East Cork.
Dr Costello told those at the conference that Gráinne "struggles due to blindness"; has been hospitalised after seizures; that her memory is "not as good as it used to be".
And he told them she is "always nervous".
At the end of the conference, the doctors agreed that continued specialised monitoring was needed to record her seizures; that Dr Costello would present her case at an epilepsy surgery meeting in Beaumont and, if she was deemed a suitable surgical candidate, then formal specific cognitive testing (neuropsychometric assessment) and Wada tests (for epilepsy patients considering surgery) were needed.
The following January, an epilepsy surgery conference took place at Beaumont Hospital to discuss Gráinne's case. More neurological heavyweights attended. They agreed Gráinne needed specialist pre-surgical tests and she should be referred to Beaumont. They agreed, given her visual difficulties, that early referral was needed.
In Feb 2011, Dr Costello wrote to Mark Mulrooney, the senior clinical neuropsychologist at the Department of Psychology in Beaumont, saying he was "referring her earlier than is typical" as he believed Gráinne's case "might take more work and time than unusual" because of the part of her brain in which the epilepsy was occurring.
Two years later, Gráinne is waiting for the tests she must have before any decision can be made as regards future surgery. In desperation, and on Dr Costello's recommendation, she wrote to the HSE hoping to avail of treatment under the Treatment Abroad Scheme. Her first letter was rejected on the grounds that she had filled out the incorrect form and she would have to apply again. This was last November. She reapplied and, on Dec 10, received rejection on the basis that the services she needed "are available in Ireland and in order for a referral abroad to be considered by the TAS, a treatment that is not available in Ireland must be specified". She was told she could appeal the decision within 10 working days.
This she did, sending her appeal by registered post to TAS general manager Catherine Donohue on Dec 20.
Her father, Tom O'Connor, says they "scrambled to insure we would have all the documentation needed for an appeal".
"The appeal and documents were posted from the GPO in Cork City on Dec 20 by registered post, inside the 10 working days deadline. The registered letter didn't reach the office of the TAS in Kilkenny until Dec 28. It got caught in the Christmas rush. I don't know what more we could have done," Tom says.
The HSE wrote back on Jan 7 refusing Gráinne's request to travel abroad for the treatment her consultant says she requires without delay. In his letter to TAS in support of Gráinne's application, Dr Costello wrote that she had drug-resistant temporal lobe epilepsy (TLE) and has regular seizures, some of which are convulsive in nature. He warned that chronic, poorly controlled TLE is often associated with progressive cognitive decline and mental health difficulties.
"In addition, poorly controlled epilepsy carried a risk of SUDEP [sudden unexpected death in epilepsy]," he said.
He also pointed out that Gráinne needed specialist monitoring - known as video-EEG monitoring - which she should have been able to avail of at a newly refurbished epilepsy monitoring unit at CUH, but for the fact that the unit remains closed due to the ongoing staff moratorium.
None of the concerns Dr Costello outlined carried any clout against the weight of HSE bureaucracy. Gráinne was outside the deadline and so Gráinne could continue to wait. The HSE did go to the trouble of contacting An Post to track the history of Gráinne's registered letter. They even returned it to Gráinne. Then they told her to talk to her consultant about a referral to Beaumont, the same consultant who sought that very referral in Feb 2011.