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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 Source: 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 Source: 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 Source: 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. Source: 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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About the author:

Órla Ryan

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