Olivia's MRI brought forward after mother’s letter published
An MRI scheduled for 2019 for a little girl with a profoundly curved spine has been brought forward to next month after her mother wrote a heartfelt letter in the Irish Examiner, pleading for Health Minister Simon Harris to intervene.
Monica White, from Mallow, Co Cork, was contacted by Our Lady’s Children’s Hospital Crumlin after the article appeared and offered a new date of June 22 for an MRI for her nine-year-old daughter Olivia.
The MRI had originally been scheduled for April 2019.
“Obviously we are really pleased and relieved. We are hoping that it will lead to the treatment Olivia needs to set her on the right path to a good quality of life,” Monica said.
She was also “bemused” the appointment offer came so swiftly, the day after the article appeared, but that it had proved making their case public had helped.
In last Monday’s Irish Examiner, Monica wrote: “Unfortunately, the climate we live in compels innumerable parents like me to steel ourselves for the fight.
It forces us to force ourselves to compromise the privacy and dignity of our vulnerable children and make a story that is not ours, fair game for the public.
“If I was sick and vulnerable I would not wish my story to be media fodder, I would like the doctor to close the curtains around my hospital bed and tell me sensitively and with great empathy her expert opinion on my prognosis.
“This is basic, this is entirely reasonable. But as the mother of a disabled child in this country it has become de rigueur to throw back those curtains, shout it from the rooftops.”
Monica said the family has received a “phenomenal” amount of support and well wishes since her letter appeared.
The family has also been contacted by Make a Wish Ireland, a charity that grants the wishes of children with life-threatening medical conditions.
Monica said arranging a meeting with singer Niall Horan may form the basis of their wish, as he is a firm favourite of her daughter’s but they are considering their options.
Olivia was born in 2009 and diagnosed with MetaChromaticLeukodystrophy in 2011, a terminal disorder.
However, seven months later it emerged that she had been misdiagnosed.
A year later, she was diagnosed with Rett Syndrome. She cannot walk or talk and depends on her family for the most basic tasks. Olivia also has postural scoliosis. Monica said her curve is now at more than 70 degrees and that she urgently requires intervention to straighten her spine.
However an MRI is part of the diagnostic preparation for surgery and without this investigation, she could not be placed on a waiting list. The lists are comprised of children clinically deemed to require surgery following assessment and diagnostic investigation.
Last year, the HSE drew up an Action Plan for Scoliosis following a public outcry at the damage done to children facing excessive waits for scoliosis surgery. The action plan committed to ensuring no child would wait more than four months for surgery by the end of 2017.
Latest figures show 137 spinal procedures were carried out in 2018, up to May 4, at Crumlin Hospital and Temple St Children’s Hospital.
The total number of patients on waiting lists clinically deemed as requiring surgery is 173, of whom 84 are awaiting spinal fusion and 89 are waiting for “other spinal procedures”.
The lists do not include children awaiting investigations to deem them clinically in need of surgery.
A total of 29 children travelled overseas in the past 12 months for treatment, an option available under the action plan.
