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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 Elizabeth W
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    Jan 31st 2016, 9:10 PM

    It’s unbelievably shocking the waiting lists for children. Never something I appreciated until recently. Getting things done for children should be a priority. So that they don’t have complications later. It’s heartache for the child and family and ends up costing more in the long run.

    131
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    Mute Little Diddy No
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    Feb 1st 2016, 3:15 PM

    And a huge number of mentally distressed children and adolescents waiting more than a year to access the HSE Children & Adolescents Mental Health Service as well – completely unacceptable in any decent society.
    That’s why, when candidates knock on your door, you should tell them you don’t wish to have your vote bought with tax or USC cuts – you want them instead to invest that money into starting to reverse some of the savage cuts in recent years to services and supports for our most vulnerable. That is the only moral path.

    3
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    Mute Cupid Stunt
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    Jan 31st 2016, 9:31 PM

    250000 for carpets for leinster house, 500000 to move the work of art outside the central bank, tds expenses 40 million, there’s plenty of money around but just not for the children of Eire, you can thank fine Gael and Labour for that.

    102
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    Mute Al Ca
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    Jan 31st 2016, 9:28 PM

    This Government can find the €1000′s to well overpay their advisers above the set wage cap……but not for sick children.

    74
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    Mute Bondage Informer
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    Jan 31st 2016, 9:22 PM

    The public system is a complete failure. DOH and HSE managers don’t have a clue and their incompetence is killing people. No concerns here as there is ZERO accountability in these positions.

    74
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    Mute dave muller
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    Jan 31st 2016, 9:18 PM

    A sickening situation for anyone to have to wait for this operation. If these kids can’t be helped here due to the excuse ridden HSE rubbish then they need to be sent out to other European countries where they work on the alien concept of the idea of speed of service. Waiting lists cause pain and in the end cost more than dealing with the patients immediately.

    64
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    Mute eggy
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    Jan 31st 2016, 10:06 PM

    Scoliosis is a really horrible thing to live with. I only found out I had it at 14 by pure accident. Luckily the surgery was done when I was 16 so it wasn’t too bad. It really made my quality of life a lot better too

    52
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    Mute Mark Gerard Lochlain
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    Jan 31st 2016, 9:32 PM

    This is appalling. Shame on the HSE and the Government. Children should be a priority when it comes to medical care. It disgusts me

    40
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    Mute Deirdre McDonnell
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    Feb 1st 2016, 12:09 AM

    For any parent of a child with scoliosis please feel free to join my support group. We are working together to try get the lists down and need all the support we can get.

    Thank you for the lovely comments. I won’t stop until Mr varadker understands why these lists need to be sorted before it’s too late.

    https://m.facebook.com/groups/415024695288784

    35
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    Mute Kevin Mullen
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    Jan 31st 2016, 9:57 PM

    Before Burton gave her backslapping speech to her horde of liars, it was penned by a cohort of over paid arse lickers who’s salary would pay for the operation that these people deserve especially when funny noonan has a fortune to build a doomsday wall

    30
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    Mute Niamh Ní Néill
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    Jan 31st 2016, 10:54 PM

    I was luckily diagnosed at the age of 6 due to the District Nurse visit to the school to do routine checks on eyesight, hearing general development etc. I had two curves in opposite directions (sideways so they didn’t impinge on any my organs) so I stood straight and to all appearances had a straight spine. I and wore a brace from the age of 7 to 14 which corrected the top curve but unfortunately the bottom curve was not corrected and I had a spinal fusion operation in 1990 by the amazing and now retired Dr Frank McManus at Cappagh Orthopeadic Hosptial. I was very lucky to be diagnosed so young and wonder if cuts to health visits to schools are meaning children don’t get picked up until much older and where that curve could’ve been corrected if picked up earlier.
    I also remember some of the costs were covered by my parent’s VHI insurance account in order to be operated on sooner so the curve didn’t progress too much and remember that they tried to wangle out of payment by suggesting that the surgery was cosmetic. Thankfully a letter from McManus and his surgical team sorted that one out.

    30
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    Mute Rashers Tierney
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    Jan 31st 2016, 9:54 PM

    To the author of this article. Excuse me for asking, but what gives you the impression that this Government, or indeed ANY state agency, has any interest in your plight? (or anyone else’s plight, for that matter). There must be a death ; a slew of reports ; publicity and the threat of law suits to arouse the vaguest interest. You DO know that, don’t you?

    23
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    Mute Patricia Anderton
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    Jan 31st 2016, 9:54 PM

    Why were they worried to operate earlier? I was 13 when I had a rod put on my spine, ww was in 1982- Dr frank Dowling in crumlin hospital for

    23
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    Mute Aaron Daly
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    Jan 31st 2016, 10:48 PM

    “significant progress achieved in the management of the spinal surgery waiting list in the last year”.??? Well done HSE. 2009- 75 children waiting on spinal surgery, 2016 -250 children waiting in pain. That’s not the progress we need!

    20
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    Mute Enda Elvery
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    Jan 31st 2016, 10:06 PM

    Shame on the people of Ireland,To allow this.

    If the minister of health got boycotted
    In the next election, we’d show real people power. And the next minister would jump to our tune.

    19
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    Mute @mdmak33
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    Jan 31st 2016, 10:25 PM

    All the mouthing fg,lab, do about children, they do not care about anyone outside their circle.

    18
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    Mute Andrea Rock Massey
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    Jan 31st 2016, 10:15 PM

    The crosscare directive scheme is the only way to go for people waiting for treatment here. Look into it people. I’m in the process of arranging to have my daughter’s tonsils removed privately up north and the HSE will be picking up the tab. They will pay whatever it would have cost if I was having them removed here (they pay the cheaper of the two) and I only have to pay the difference which is going to be very little. Everyone is entitled to this care now.

    16
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    Mute Gus Sheridan
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    Feb 1st 2016, 1:24 AM

    The heavy burden of doing nothing will be lifted soon Leo, so sorry to see you go, mind the door doesn’t hit your sorry arse on the way out.

    10
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    Mute Rashers Tierney
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    Jan 31st 2016, 10:28 PM

    “causes abnormal curvature in the spine or backbone”?? Jesus wept.

    9
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    Mute Matty Reese
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    Jan 31st 2016, 11:08 PM

    Sorry to hear about your condition Dierdre and thank you for explaining what it is. I am tired of lazy journalism where the author uses words they dont understand and dlnt care that we dont understand. Illness and ailments are not just fancy words, they are conditions that real peolle suffer from and the rest of us are capable of understanding about.

    8
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    Mute Matty Reese
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    Jan 31st 2016, 10:39 PM

    Orĺá. Thank you for highlighting this issue and bringing it to a wider audience.
    However I dont understand why you bring in uncommon terms such as “neuropathy” without explanation of its meaning. It is standard practice in science and medicine to briefly explain any term not in everyday use upon its first mention in any article even it is written for a specialist audience., This applies more so when said article is directed at the general public.

    2
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    Mute Deirdre McDonnell
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    Jan 31st 2016, 10:58 PM

    Neuropathy is peripheral nerve damage caused by the curve crushing my spinal cord,which presents itself in foot numbness in my case to the extent I had a bone infection in my foot and couldn’t feel a thing,normally this infection (osteomyelitis) causes severe pain. Not to me!

    25
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    Mute jane
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    Jan 31st 2016, 11:09 PM

    Always has to be one ass. Very well written and interesting article Deirdre. A Google search will explain any of the hard words for you Matty.

    21
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    Mute Orla Forkan
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    Dec 24th 2016, 10:46 AM

    Well done. My daughter has ehlers danlos syndrome and lots of comorbidities including scoliosis Atlantoaxial axial instability chiari and cervical instability.
    We have to travel to uk in order to access the expert care she needs. She now has to travel to USA for neurosurgery and fusion. This has to be privately funds no support from the state. Shame on government and the pretence that we have a health equitable service. Those with rare diseases continue to be ignored by the state

    1
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    Mute Katie McBride
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    Dec 24th 2016, 10:09 AM

    I had a spinal fusion done for scoliosis when I was 15 in 2005. I was so lucky that there was no waiting lists back then. I couldn’t imagine life now if I hadn’t had the surgery done. It’s a disgrace that those children are left to deteriorate while waiting for so long for a consultation.

    1
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    Mute Dave Doyle
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    Feb 1st 2016, 6:44 PM

    When it’s more important to pay banker debts and bondholders, kids needing any sort of medical intervention to save lives or improve the quality of life will never be given any sort of priority.Banks and bondholders are much more needy and important that sick kids.
    Even with such a fantastic “recovery” in which we are all doing so well, so better off, ordinary people, the children of ordinary people are not allowed share or benefit from it
    A heartless, uncaring government. Vote them out.

    1
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    Mute Milicent Harison
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    Nov 29th 2016, 4:19 PM

    This is also what Beatrice West said about same Doctor Uwadia Amenifo, i sometime talk about.

    ‘I am Beatrice West of 100 Adams Street, Texas, USA. I want to quickly enjoin all here to help me say a big thanks to

    Doctor Uwadia Amenifo for his wonderful work he has done for my family for saving my son of his Hypermobility and

    scoliosis. Brethren, my son by name is called Josh, and he is 18 years old. He was very ill when he was 8 years, and was

    treated, we noticed that he begin to have issues with working when he was 10 years he always complain of his joints and

    spine, and we took him to hospital for treatment, and the doctor diagnosed hypermobility, so he was given medications, and

    we continued to give him his medications until when he was 15 he was also diagnosed of scoliosis in this, my son was

    unable to Bend forward and backward, He was Walking with pain, he Doesn’t sleep well, Wake up middle of night to toilet

    and During daytime he can’t stand to wee wee and need to rush him to toilet. This continues for two years and I was

    running hectare scepter looking for how to get a cure for him. I was always doing a research online about his disease, and

    I found in a blog where a woman aged 50 testified of how she was cured of scoliosis by a herbal Doctor Uwadia Amenifo with

    the use of herbal medicine, and she didn’t have to undergo any surgery. So I found the info interesting and decided to be

    in contact with the said herbal doctor. In the blog were the contact details of the herbal doctor. So I pick up his

    contact and contacted him. After explaining what my son is going through he simply said to me that he is suffering from

    scoliosis that was when I then told him that also he have hypermobility. So he counseled me, and promised me that he will

    cure my son with his herbal medicine. So we concluded the arrangement, and he prepared the herbal medicine, and sent it to

    me in Texas. So I gave it to my son just as he directed and to god be the glory my son was totally cured by his herbal

    medicine of his hypermobility, and also hos scoliosis, and as I write this testimony, my son is totally cured and can now

    move well and do all he was made to do. So please I want all here to help me say a big thanks to doctor Uwadia Amenifo for

    his wonderful work in the life of my son. Today my son is totally cured. Please if you want to talk with doctor Uwadia

    Amenifo concerning your health issues, and also if you are suffering from hypermobility, and or scoliosis and you want to

    be cured without surgery just as my son was cured without surgery contact Dr Uwadia now on his email

    (doctoruwadiaamenifo@gmail.com) or call him on (+2349052015874). God bless you all’.

    1
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