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'I fear it’s going to take a child to die before they act'

Deirdre McDonnell is “unbelievably shocked” at the length of waiting lists for children with scoliosis.

THIS TIME LAST year Deirdre McDonnell was getting used to media attention.

The Louth woman became the first adult to undergo surgery to insert a magnetic rod in her back in a bid to partially reverse the effects of scoliosis.

The condition causes an abnormal curve of the spine.

d Deirdre McDonnell Deirdre McDonnell

In January 2014, Deirdre was told she had ten years to live. That’s when she knew she needed to take drastic action.

“My internal organs were starting to be crushed,” she recalls.

Deirdre (35) had stage one respiratory failure and 30% lung capacity. She was prone to bouts of pneumonia, chest infections and pleurisy.

My surgeon knew how bad I was. We had to weigh up the benefits and the risks. I thought, ‘I either die trying or I’m going to die anyway’.

Her surgeon, Dr Patrick Kiely, wrote to the HSE and received funding for the ‘Magec Rod’ operation – which costs in the region of €20,000.

“The difference between before and after is huge, but the damage is done and it can’t be undone,” Deirdre notes.

IMG_2436 X-ray before and after surgery Deirdre McDonnell Deirdre McDonnell

Her organs now have “slightly more room” but her lung function is still just 35%.

“My lungs will be damaged for the rest of my life.”

Post-surgery, she has “one or two more stretches to get done” before she has a full spinal fusion.

Deirdre also has tachycardia – an abnormally fast heart rate, neuropathy in one foot, and has been on a waiting list for over two years to see an neurologist.

Despite this, she remains positive. “I’m coping well and doing very, very well.”

Waiting lists 

Deirdre says she went public with her story to show how bad scoliosis can get, but also to show that there is hope for patients.

She’s frustrated that, one year on, some children with scoliosis are waiting up to 15 months to see a consultant.

IMG_2780 A Straight Ahead fundraiser Deirdre McDonnell Deirdre McDonnell

Earlier this month, RTÉ reported that over 250 children with scoliosis are either waiting on an operation to fix a spinal curvature or waiting to see a consultant.

There are 164 children waiting for surgery, primarily at Our Lady’s Children’s Hospital Crumlin, but about 20 at Temple Street Children’s University Hospital.

Deirdre says she was “unbelievably shocked” about how long the waiting lists are.

She notes that this wasn’t really an issue when she was a child. However, doctors were afraid to operate on her in case they damaged her spinal cord.

“When I was a child the waiting lists were not an issue, it was more that surgeons were terrified to touch me because of my spinal cord. They were afraid they’d leave me worse off, that they’d put me in a wheelchair.

I don’t think anybody realises how bad [scoliosis] can get. I feel it’s going to take a child to die before they turn around and say ‘Oh shit’.

Straight Ahead

Kiely launched Straight Ahead in 2011, with the aim of helping time-critical cases of children who are in danger of deterioration while on waiting lists for orthopaedic surgery.

Since then the charity has completed 50 life-changing surgeries for children who urgently required operations as a result of severe orthopaedic deformities. Straight Ahead is a affiliated with the Children’s Medical & Research Foundation, and most of its operations are carried out Our Lady’s Children’s Hospital in Crumlin.

The charity is resourced through fundraising, donations and voluntary labour.

IMG_1606 Patrick and Deirdre at a Straight Ahead fundraiser. Deirdre McDonnell Deirdre McDonnell

New theatre

A spokesperson the Children’s Hospital Group told TheJournal.ie there has been “significant progress achieved in the management of the spinal surgery waiting list in the last year”.

In 2015, 133 scoliosis surgeries were carried out, which is 51% more than in 2014. That included 67 in Crumlin with a further 66 being outsourced. A further 39 patients from the Crumlin waiting list have been transferred to either the Blackrock Clinic or to the Royal National Orthopaedic Hospital at Stanmore for treatment over the coming weeks.
Our Lady’s Children’s Hospital, Crumlin and the Children’s Hospital Group are working with the HSE and the Department of Health in identifying and progressing options to address the waiting times for spinal surgery. This includes both financial and capital investment.

“The financial investment will allow for the recruitment of an additional two orthopaedic consultant posts and additional support staff dedicated to improving access. A new HSE-funded orthopaedic theatre is due for completion at the hospital by April of this year and a project manager with a specific remit for orthopaedic services has also been appointed to support the team.”

Deirdre says she hopes enough staff are taken on to run the theatre.

“My biggest fear is a child is going to die or end up with severe respiratory or heart problems. It all can be avoided if the HSE would just pay for surgery right now.”

This article was originally published on 31 January 2016

More information about scolisois, and advice, can be found on Scoliosis Ireland’s website.

For more information about Straight Ahead, visit the charity’s website

Read: ‘Can you imagine what it’s like to have scoliosis, Tánaiste?’

Read: This is the curved spine of a teenager whose surgery was cancelled yesterday

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27 Comments
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    Mute Bob O'Driscoll
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    Nov 4th 2014, 3:16 PM

    Why not do a ‘search’ every week?

    237
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    Mute Philip King
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    Nov 4th 2014, 10:22 PM

    Guards don’t work in prison. That would be prison officers.

    32
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    Mute andrew
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    Nov 4th 2014, 3:05 PM

    The search was based on intelligence gathered

    Must have taken some time. Proably easier to find the cocaine than the intelligence

    174
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    Mute Dirk Diggler
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    Nov 4th 2014, 3:15 PM

    It’s very easy to jam mobile phone signals, i cant see why they don’t use this tech.. in prisons.

    168
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    Mute Dirk Diggler
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    Nov 4th 2014, 3:20 PM

    Surely a quick sniffer dog patrol every day would root out a lot of the drugs. It’s probebly easier to leave drugs in to keep the peace. A PR search every now and again to keep the powers that be happy.

    129
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    Mute Reg
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    Nov 4th 2014, 3:06 PM

    Elmo had it under the pillow. No wonder it was found!

    154
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    Mute Martin Sinnott
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    Nov 4th 2014, 3:02 PM

    “Intelligence led” they were looking @ Love/Hate

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    Mute peter
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    Nov 4th 2014, 3:48 PM

    They should not have tv’s, radios and mobile phone signals should be blocked so even if they had a phone it would be useless.
    The net over the yard to catch drugs should be doubled or trebled to reduce the amount that gets in.
    Any one with a previous conviction should not be allowed make a visit.
    They should have toilets instead of pots and they should have a course on life skills and courses they make being employed easier as prison is about reform not just locking people away.

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    Mute Shawn Rahoon
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    Nov 4th 2014, 3:12 PM

    How could they have missed the 72inch tv?

    80
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    Mute Silent Majority
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    Nov 4th 2014, 3:16 PM

    I don’t understand prison drug trades. Presumably drugs are more expensive than on the street due to increased risks, and they ain’t cheap on the streets, so how do prisoners pay for them?

    71
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    Mute Darren Connolly
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    Nov 4th 2014, 3:26 PM

    Quite simply they use there mobile to ring a loved one who meets some from the prisoner selling its family and pays them the agreed price….
    Ecery week a tennies ball will be hit over the wall at an agreed time when prisoners are in the yard the risks are actually less yet again they agree this time by a mobile phone call

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    Mute Colin Howell
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    Nov 4th 2014, 3:22 PM

    That they can charge their phones is surprising

    50
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    Mute Darren Connolly
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    Nov 4th 2014, 3:28 PM

    its not really when prisoners doing life have TV s in there cells

    32
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    Mute Colin Howell
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    Nov 4th 2014, 7:54 PM

    Yes but access to electricity is hardly a good thing to have in a prison cell. Potentially dangerous

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    Mute Dermot Ryan
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    Nov 4th 2014, 3:24 PM

    “Anything going on tonight?”
    “Party in Wing F. Tonight !”

    38
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    Mute Andrew McQuillan
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    Nov 4th 2014, 6:17 PM

    And still the Irish media treat John Lonergan as if he was some kind of wise visionary, rather than someone who benignly oversaw this tolerated drug den from start to finish during his term as governor.

    I’m convinced there must be a genuine desire of the authorities to NOT address the drug problem (with the exception of PR smoke screens like today).

    Preventing solid items from entering an enclosed and heavily guarded premises should not be as impossible as it appears to be in the Joy.

    So are the criminals unbelievably clever? Or the guards unbelievably complicit?

    24
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    Mute Mick Jordan
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    Nov 4th 2014, 9:15 PM

    Andrew its neither. It more a lack of resources. There are only 6 OSG staff on duty each day in Mountjoy. 3 of which work in the visitor search area and the other 3 are tasked with searching cells, listening in to prisoner phone calls and gathering intelligence. The other Staff in in Mountjoy are given approx 15- 20 mins per day to do a daily search of 2 Cells on each landing. Now its not just Prison Officers that work in Mountjoy there are several diffrent groups of civilian staff from Teachers, Psychologists, Dentists, Doctors, Pharmacists, Probation Officers, Delivery men and with all the renovation going on Contractors and their vehicles.
    What you don’t hear about are the arrests on a daily basis of people being caught attempting to smuggle contraband. To make Mountjoy or any prison completely contraband free would require a massive boost in both manpower and resources both of which cost money. Money the Government are not prepared to spend and I a sure most Tax payers are not prepared to fund. So Officers do the best they can with one hand tied behind their back and one eye covered.

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    Mute Niall Donnelly
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    Nov 4th 2014, 5:59 PM

    It can be easily sorted. Just make it compulsory for every SIM card to be registered with id and proof of address.

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    Mute Thierry Rat
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    Nov 4th 2014, 3:00 PM

    This isn’t news

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    Mute Paperboy2
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    Nov 4th 2014, 3:12 PM

    It is news if you haven’t heard about it already…

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    Mute Zoltar
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    Nov 4th 2014, 10:26 PM

    They can’t even control drugs in prisons…

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    Mute John Waters
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    Nov 4th 2014, 3:26 PM

    Must be Frann and co from Love Hate lol

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    Mute Emer Caffrey
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    Nov 4th 2014, 10:23 PM

    how hard can it be to block coverage to mobiles in a confined area, simple

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    Mute Kustin J Crush
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    Nov 5th 2014, 12:17 AM

    I just wonder how it coats 70k each year to keep someone in jail, it isn’t as if they have to hire a guard for each lag!

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