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Newborn baby in hospital. Shutterstock/Kwangmoozaa

'The doctors have no idea how to treat her condition' Giving birth to Ireland's smallest surviving baby

Katie Keogh writes about her baby Charlotte who was born with an extremely rare condition.

I GAVE BIRTH to the current smallest surviving baby born in Ireland, and she continues to break records every day in her fight for survival. 

My baby Charlotte was born on 20 June this year and she weighed just 390g – less than a pound. She was delivered by c-section as she was severely growth restricted.

The doctors have no idea how to treat the condition Chronic Histiocytic Intervillositis, which causes placental failure. It’s extremely rare and also has a high recurrence rate, which was part of my experience. 

My son had the same placental condition before he was born sleeping in May 2017. We had the opportunity for a post-mortem which then showed the condition within the placenta.

This gave me an opportunity to gather my own research on it before Charlotte was even born.

Although it’s a rare condition, I’m certainly not alone. There is a Facebook group with parents whose children have the same condition with only around 500 members from across the world. 

Generally, I would be quite wary of these groups because I know there can be a lot of different opinions but I think because the condition is so rare and the group so small, we just all share our stories with each other, guide and support each other along this journey. 

It’s also useful because we can sometimes go back to our consultants and explain that a certain combination of drugs worked for a large percentage of patients, and tell them about the amount they were taking, etc.

Some consultants in other places like France and the UK are working on this condition on a regular basis and they have had a lot more success in delivering babies to full-term. I hope Ireland can get to this stage in the future.   

Visiting Charlotte

I had to take time off work after my son was stillborn as I was then diagnosed with anxiety and depression.

Due to taking time off work, I didn’t have 26 weeks worked before Charlotte was born so I didn’t qualify this year for maternity benefit.  I was in a full-time career before all of this and I’ve had to give up everything else to become a mum.

But now I wouldn’t change it for the world.

When I became pregnant again, I was attending the hospital every two weeks with appointments and check-ups. Carrying constant fear but also hope. 

When Charlotte arrived, she was breathing, kicking and punching.  Thankfully they had equipment to fit her and treat her.  

They still don’t know how we can prevent this condition in the future, but thankfully with the opportunity to deliver Charlotte early she has been growing and thriving. 

The doctors and nurses in the hospital really had to fight for her to get to a size they can understand and that they have worked with before. 

Up until recently, a little part of her heart had remained open after she was born. If she was brought to full term, it would have closed up but this just wasn’t possible.

She was treated for this with paracetamol to help it close off and she is able to breathe better on her own now. 

To be honest, I’m exhausted at the moment. I’m expressing breast milk which has to be done every three hours and at least once every night between midnight and 6am. I’m planning my day around each three hour pump.

I get the bus from Arklow in Wicklow to Holles Street Hospital every day because it seems to be the cheapest option. 

I leave home between half 11 and half one each day, depending on how tired I am from the day before. A ticket costs €9 each way. 

My partner works in Dublin and he goes to the hospital after work at half six in the evening. We then spend an hour with Charlotte before the nurses do handover for an hour to see how she’s doing. 

We’ve decided that half seven is our cut off time for visiting. If we wait until the handover is finished at half eight, it’s going to take us an hour to drive home and we wouldn’t be back home until 10.30pm or even later. 

The future 

We don’t know at the moment when she will be discharged from hospital. She has to get to 2.2 kg in weight before there is a possibility of her coming home and she is 1.9 kg now, so she’s getting there.

We just need to work on feeding and breathing. Charlotte tried her first bottle recently and she guzzled it and absolutely loved it. I finally feel like I have a baby now. 

The nurses and paediatric team in the neonatal unit are absolutely amazing and it takes a very special type of person to do their job.

The knowledge they have is incredible and the amount of care they also have for parents is admirable. I would have lost my mind if I didn’t have them.  

It’s important to remember as well that it’s okay to seek help and support for your mental health. It’s something I have struggled and dealt with since I lost my son in 2017 and the support from the mental health team has been amazing.

Getting to know other mums in the hospital is lovely. You make some really amazing friendships and you’re almost like sisters. You really bond and keep each other sane when you’re all stuck in there together.  

If any changes could be made, little things to make the experience more comfortable for the parents would be fantastic.

You’re within four walls looking at the same stuff every day sitting on a waiting room chair, in a dark room for half of it with lots of monitors so it can play on your mind a little bit sometimes. You get tired and frustrated.  

The parents’ room tends to be used for mums who stay overnight before they can finally take their baby home, but it kind of takes away that one space where parents can escape to for five minutes. 

There’s only one bathroom in the unit as well. Generally it’s free and it’s fine, but Mums staying in the parent room could be having their showers there while there could be a few of us storming in on top of her or waiting outside.  

For any parents in a similar situation or those who could face it in the future, it’s something you fall into a routine with. There is no right or wrong way during this journey, you really do have to take each day as it comes and don’t be afraid to ask questions.  

I’m not looking for pity here: I truly want this to be a positive story. It’s important to remember to try to enjoy the journey rather than just stressing over every little thing.  Something I will take on board myself next time. 

The financial strife is really difficult, but it’s important to remember that you have this new job to do and it’s all that matters.  

You will get there, just make the most of every second and treasure every moment.

Currently, Children in Hospital Ireland are asking parents and guardians who have or have had a child in hospital, either as an in-patient or attending outpatient clinics, to participate in a Financial Research Survey. The survey takes approximately 15 minutes and is available here. The group says that by taking part in this survey, parents will “help to inform policy recommendations to government on improving supports to families”.

If you would like more information or to request a paper version of the survey please email research@childreninhospital.ie or call their offices at 01 290 3510.

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    Mute Honeybee
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    Oct 23rd 2017, 8:40 AM

    It would be helpful if there was more detail as to location and description of individual .

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    Mute Paul Furey
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    Oct 23rd 2017, 9:03 AM

    @Honeybee: Maybe there isn’t any…..it’s breaking news……

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    Mute Joe Bloggs
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    Oct 23rd 2017, 9:04 AM

    @Honeybee: He’s the man with the gun; seeing as this isn’t America, anyone walking around with a gun is going to stand out.

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    Mute Paul Furey
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    Oct 23rd 2017, 9:04 AM

    @Honeybee: And if you read the article

    “No description of the man is available at present.”

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    Mute Honeybee
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    Oct 23rd 2017, 9:07 AM

    @Paul Furey: If he’s been involved in a number of incidents then they must have some information and Tallaght is vast in size, so some indication of where the incidents occurred would assist people to be on the lookout otherwise Do the Bort Mans description below is as good as it gets.

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    Mute Honeybee
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    Oct 23rd 2017, 9:14 AM

    @Joe Bloggs: If he was waving the gun around, I think there would be no need to issue an appeal, he would already have been located, they said a gun not a larger weapon, guns can be hidden in clothing.

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    Mute Seth Cheffetz
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    Oct 23rd 2017, 9:16 AM

    @Joe Bloggs: in Tallaght, so not really.

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    Mute Honeybee
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    Oct 23rd 2017, 9:26 AM

    @Nick Allen: Thanks Nick…….umm is Thursday your day for doing business as well……

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    Mute Nick Allen
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    Oct 23rd 2017, 9:49 AM

    @Honeybee:

    I do all mine online

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    Mute Honeybee
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    Oct 23rd 2017, 10:03 AM

    @Nick Allen: Reminds me of a story I once read, two poorly educated guys robbed a bank in America, they rushed home with the sacks of money, you grab a sack and start counting says one, nah, grab two cans, we’ll watch the news later on, they’ll tell us how much we stole says the other.

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    Mute Joe Bloggs
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    Oct 23rd 2017, 10:07 AM

    @Honeybee: Funnily enough, most people who commit crimes don’t tend to hang around to be caught. If the Gardaí give a description then every crank, nutter & a$$hole will ring in with false reports; it happens every time. Better to keep it vague, look for any suspicious activity & filter out the rubbish.

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    Mute Dave Hammond
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    Oct 23rd 2017, 11:00 AM

    @Paul Furey: relax it’s grand – we have a local councilor on the case

    25
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    Mute Paul Furey
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    Oct 23rd 2017, 12:52 PM

    @Dave Hammond: OK standing down :)

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    Mute Honeybee
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    Oct 23rd 2017, 2:43 PM

    @Honeybee: Well done to gardai on the arrest, good news to have this man off the streets.

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    Mute Lynn Mac Amhalghaidh
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    Oct 23rd 2017, 5:09 PM

    @Paul Furey: theres a vid of him being arrested on fb

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    Mute rory conway
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    Oct 23rd 2017, 6:12 PM

    @Honeybee: Why not just thank the brave Gardai ?

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    Mute Do the Bort man
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    Oct 23rd 2017, 8:58 AM

    SUSPECT IS HATLESS. REPEAT HATLESS.

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    Mute john g mcgrath
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    Oct 23rd 2017, 9:51 AM

    @Do the Bort man: Luas must be off

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    Mute Frankly Mydear
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    Oct 23rd 2017, 12:35 PM

    @john g mcgrath: madman on the Luas

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    Mute Conor
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    Oct 23rd 2017, 4:27 PM

    @Do the Bort man: I hope they throw his hatless butt in jail.

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    Mute James Lyons
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    Oct 23rd 2017, 8:37 AM

    I have arms and I’m in Tallaght. Perhaps I should turn myself in

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    Mute Ciarán Masterson
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    Oct 23rd 2017, 10:27 AM

    An armed man on the loose in Tallaght – I heard that he’s a member of the Tallaban.

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    Mute Father Hody Commody
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    Oct 24th 2017, 3:49 AM

    @Ciarán Masterson: And they are asking people to become the AyesATallaght

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    Mute Kieran Conroy
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    Oct 23rd 2017, 9:29 AM

    Tallaght-the new Johannesburg.

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    Mute alan scott
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    Oct 23rd 2017, 9:34 AM

    @Kieran Conroy: why is it the ones with no faces are the ones with the most idiotic statements?

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    Mute Kieran Conroy
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    Oct 23rd 2017, 10:01 AM

    @alan scott: Also,Jo’burg is famous for car-jacking.

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    Mute Mrs. Nugent
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    Oct 23rd 2017, 10:02 AM

    @Kieran Conroy: yes but no one laughing wNkstsain.

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    Mute Daffy the Bear
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    Oct 23rd 2017, 1:07 PM

    @Mrs. Nugent: I laughed a little bit..

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    Mute Nick Allen
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    Oct 23rd 2017, 8:46 AM

    If they do a proper search I suspect they may find more than one

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    Mute Kevin Slater
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    Oct 23rd 2017, 1:16 PM

    I’ve long said these people should be prevented from breeding. Then in a generation we’d have completely bred out the criminal element, reduced the prison population and solved the housing crisis not to mention reducing the dole queue

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    Mute alan scott
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    Oct 23rd 2017, 8:37 PM

    @Kevin Slater: absolutely agree. Waste of oxygen. And fair play to the guards today, a very professional and prompt response.

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    Mute Ron North
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    Oct 23rd 2017, 11:57 PM

    @Fake Avast: Its mostly Bono’s fault to be fair.

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    Mute Annette
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    Oct 23rd 2017, 9:12 AM

    whenever i read a story like this, i feel for the lives of our gardai. All of them must be given firearms.

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    Mute Nick Allen
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    Oct 23rd 2017, 9:15 AM

    @Annette:

    Why stop there. Give every man, woman and child in the country and we could get rid of the Gardai, save a fortune in tax revenue and simply self regulate

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    Mute Tricia Golden
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    Oct 23rd 2017, 9:52 AM

    @Annette: Really? Let’s arm all the police?

    Do the officers get a say?

    One of my best friends is a police officer, I asked if they’d any interest in the armed response unit and their answer was “you have to be prepared to kill someone and I don’t want to be in that position”.

    So, before you unilaterally decide you want to give all police guns maybe ask yourself do the actual police all want to be armed? Not to mention, if you make it a fully armed force, the people that don’t want to kill people would never sign up. I’m not okay with that.

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    Mute Alan Scott
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    Oct 23rd 2017, 10:08 AM

    @Nick Allen: Brendan Grace I hear is looking for new ways to make people laugh I will pass on this comment as the joke of the day.

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    Mute Nick Allen
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    Oct 23rd 2017, 10:16 AM

    @Alan Scott:

    It was intended as a joke, I think arming all of the Gardai is a really stupid suggestion

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    Mute John Considine
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    Oct 23rd 2017, 10:41 AM

    @Annette: they’re bad enough already with biros and calculators.

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    Mute Annette
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    Oct 23rd 2017, 10:42 AM

    @Nick Allen: you think 175 countries are stupid arming their police force and you are only one genius left on the planet?

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    Mute Nick Allen
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    Oct 23rd 2017, 10:58 AM

    @Annette:

    Are you really that limited in your thinking. It’s not exactly a black or white question and because I suggest your recommendation is stupid you assume I am saying I am a genius. Try opening your mind a little more and try to understand why a country would need to arm their entire police force or not and also what the implications would be.

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    Mute Mick Murphy
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    Oct 23rd 2017, 11:29 AM

    @Nick Allen: I don’t want Irish Gardai armed. I say this as a Garda and I have been armed (though am not presently). We manage very well with the resources we have (in this regard). There are plenty of armed Gardai around from ERU, RSU, detectives, drugs units and so on. We aren’t stuck for guns. There is a lesser chance of getting shot on the nod if unarmed as has been shown time and again. And in the last few Garda killings only Tony Golden MAY have been saved by being armed. No we’re far better with the model we have, correctly used. It’s not like the movies when you walk into an incident. Everyone thinks they know it all when you’re actually relying on training and instinct. Irish people in the vast majority are decent and wouldn’t dream of shooting a Garda. Well up until recently lol

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    Mute Nick Allen
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    Oct 23rd 2017, 11:41 AM

    @Mick Murphy:

    Thanks for sharing a first hand opinion. I am absolutely in agreement that we do not need all of the Gardai armed.

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    Mute alan scott
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    Oct 23rd 2017, 4:18 PM

    @Mick Murphy: ok you don’t need a essay we get your point

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    Mute Mick Murphy
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    Oct 23rd 2017, 4:49 PM

    @alan scott: am I supposed to edit my posts down for your convenience now Alan? Or am I as entitled to write what and as i choose like everyone else? If you’ve a chip on your shoulder take it to someone who gives a f$#k…

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    Mute Ronan Gallagher
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    Oct 23rd 2017, 7:16 PM

    @Mick Murphy: Can’t be trusted with breathalysers. No way could the entire force be trusted with guns.

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    Mute Annette
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    Oct 23rd 2017, 7:48 PM

    @Mick Murphy: Mick, i respect your opinion as garda but i am sure there is another garda who wants gardai to be armed , it is your personal opinion and not of the masses. You opined that so far gardai were good without having firearms that does not necessarily mean that they would have been worse ‘having’ firearms. May be Tony would have been amongst us today without anything changing.

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    Mute alan scott
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    Oct 23rd 2017, 8:30 PM

    @Mick Murphy: when will you lot stop taking things personally.

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    Mute Mick Murphy
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    Oct 23rd 2017, 10:14 PM

    @Ronan Gallagher: lol Ronan….true that

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    Mute Mick Murphy
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    Oct 23rd 2017, 10:17 PM

    @Annette: Annette…absolutely. it is only my opinion (and most guards I know). Going into a row is harder because you could be disarmed etc. But you’re right… maybe it is the future. And I would gladly take up arms to have Tony back.

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    Mute Eyesplat Jon Franjewel
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    Oct 23rd 2017, 10:41 AM

    @Maire: Seriously Maire.
    Some unfortunate ppl in Tallaght suffer with poverty and MH issues, like most places also lots of brilliant hard working people just living their life’s.

    I bet your a judgement passing biddy. Bless You in ur glass house throwing stones.

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    Mute A H
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    Oct 23rd 2017, 11:04 AM

    @Eyesplat Jon Franjewel: have to agree with you, coming from another area with a bad name myself, so many nice people living there as well as the feral ones. It’s a shame all people have to be lumped in together, both anecdotally and physically!

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    Mute Martin Gear
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    Oct 23rd 2017, 12:54 PM

    I. Love the comments section so much I often skip the news part. great sense of humour well done everyone thanks.

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    Mute kevinhunt101
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    Oct 23rd 2017, 8:40 AM

    Wonder if he has legs too

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    Mute paul kelly
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    Oct 23rd 2017, 12:15 PM

    Is it mild enough for shorts??

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    Mute A H
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    Oct 23rd 2017, 1:18 PM

    @paul kelly: does he sound sane enough to care?!

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    Mute Maire
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    Oct 23rd 2017, 9:34 AM

    Not known as the ‘Wild West’ (of Dublin) for nothing!

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    Mute Alan Scott
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    Oct 23rd 2017, 9:46 AM

    @Maire: ? Look at your own back yard before you make idiot comment

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    Mute Philip Kedney
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    Oct 23rd 2017, 9:56 AM

    @Maire: you are right it is not known as the Wild West .

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    Mute cortisola
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    Oct 23rd 2017, 1:21 PM

    @Maire: Something like that can happen everywhere @Maile – in Dalkey, in Donnybrook, even in Foxrock. Tallaght is lovely and peaceful area and decent people live there.

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    Mute Robert Beatty
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    Oct 23rd 2017, 1:46 PM

    @Alan Scott: i checked hes not there

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    Mute Fiona Fitzgerald
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    Oct 23rd 2017, 2:27 PM

    @Maire: You don’t know where he’s from. Anyone notice that he threatened the owner to get the car keys? I thought thieves knew how to hot wire cars, is that out of date now?

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    Mute Pat Price
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    Oct 23rd 2017, 3:19 PM

    @Maire: Cant say i have heard it called that , maybe that’s an in joke among superior people like youself ,God love ye .

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    Mute Maire
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    Oct 23rd 2017, 7:52 PM

    @Alan Scott: Actually, it is in my own back yard! And, I’v been victim to being burgled by Locals, twice!, Oh sorry, three times!

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    Mute Linda Hughes
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    Oct 23rd 2017, 9:10 AM

    Well they still haven’t got him, The police helicopter is still over The Area!

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    Mute Deirdre Furlong
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    Oct 23rd 2017, 4:04 PM

    That’s some domestic row! A machine gun?

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    Mute dec dunne
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    Oct 23rd 2017, 5:42 PM

    He started off rampaging in jobstown, so he will get off, Paul clown Murphy will ensure it, he has rights. Bail probation etc.

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    Mute Noel
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    Oct 23rd 2017, 9:09 AM

    One man with a gun three hijacking lucky he not shooting people god help us if was

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    Mute A H
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    Oct 23rd 2017, 1:17 PM

    @Noel: does he sound sane enough to care?!!

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    Mute A H
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    Oct 23rd 2017, 1:18 PM

    @Noel: sorry my comment wasn’t aimed at yours it ended up in response by accident!

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    Mute Grainne Keegan
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    Oct 23rd 2017, 12:50 PM

    He is known to gardai so why can they not give a better description or release a photo of him. The papers troll through peoples Facebook pages to get photos of them especially when whey just died

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    Mute Alan Scott
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    Oct 23rd 2017, 9:29 AM

    No Idiots breaking the reds this am because there’s a Garda Q7 parked on the road no doubt waiting for this gunman I would love to see the Gardai here every day to put manners on some of these drivers who think they have a Devine right to break the reds.

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    Mute A H
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    Oct 23rd 2017, 10:13 AM

    @Alan Scott: I know….and the ones hooring up the Bus lane till they realise there’s a garda car 200m in front and indicating back in and looking sheepishly at you to let them back in….

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    Mute gary
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    Oct 23rd 2017, 10:24 AM

    @A H: Never, ever, ever, ever, ever let these people back in to the traffic.

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    Mute Alan Scott
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    Oct 23rd 2017, 10:27 AM

    @A H: Its great to watch them sweat for someone to let them out

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    Mute Seth Cheffetz
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    Oct 23rd 2017, 9:16 AM

    Well that’s like looking for a haystack in a needle
    ..

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    Mute Kevin Slater
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    Oct 23rd 2017, 1:18 PM

    No they have no human rights once they’ve impinged in someone else’s rights

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    Mute Michelle Cronin
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    Oct 23rd 2017, 2:15 PM

    Garda car and helicopter chase currently underway in Citywest.

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    Mute Honeybee
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    Oct 23rd 2017, 2:34 PM

    @Michelle Cronin: It has come to an end, thankfully the gardai have him in custody.

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    Mute Kieran Conroy
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    Oct 23rd 2017, 12:47 PM

    Careful!The easily offended Journal are deleting big-time on this.

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    Mute oh i dunno
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    Oct 23rd 2017, 5:47 PM

    Took over 7 hours to find an armed man on a rampage in a major European city?
    Where are all the fluffy liberals singing the completely inept Gardai’s praises now?

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    Mute FlyB
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    Oct 23rd 2017, 5:54 PM

    @ I dunno. Fu(k off troll.

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    Mute oh i dunno
    Favourite oh i dunno
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    Oct 23rd 2017, 6:01 PM

    Oh look, somebody on the internet with a fake profile called me a troll and told me to f’ off, seriously?? poor likkle snowflake, did my comment upset you chuck? Go to your safe space for an hour, you’ll be fine.

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    Mute FlyB
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    Oct 23rd 2017, 6:25 PM

    @I dunno The person with two tweets on their blank profile is calling me out. Go away you absolute misfortune. Your carers will be looking for you by now.

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    Mute oh i dunno
    Favourite oh i dunno
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    Oct 23rd 2017, 6:52 PM

    @FlyB: Does your Mommy know you’re online?

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    Mute Bootz Tully
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    Oct 23rd 2017, 12:22 PM

    a bloody Renault kadjar wow he feels the need for speed

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    Mute Daniel
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    Oct 23rd 2017, 1:17 PM

    Brookview is nowhere near the centre of Tallaght, just saying.

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    Mute Fiona deFreyne
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    Oct 23rd 2017, 12:34 PM

    It is good that we don’t have alarmism in Ireland over such incidents that they are Jihadist terrorist related. Now we routinely see on other stories the reassurance that it was not terrorist related.

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    Mute A H
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    Oct 23rd 2017, 1:20 PM

    @Fiona deFreyne: I think you know when you know….don’t you?

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    Mute Mike Power
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    Oct 23rd 2017, 1:24 PM

    @Fiona deFreyne: We know it’s not a Muslim terrorist because his not actually killing people.

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    Mute Shawn Rahoon
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    Oct 23rd 2017, 1:00 PM

    Only in America? Well holy God.

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    Mute Martin Gear
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    Oct 23rd 2017, 1:13 PM

    Love the comments section. Very difficult to register though

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    Mute Denis Riordan
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    Oct 23rd 2017, 2:36 PM

    Can’t blame a man out walking his dog on this one.

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    Mute Eddie Brady
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    Oct 23rd 2017, 2:13 PM

    Relax he here in Killarney clay pidgeon shooting he just had a bad morning ..

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    Mute Eddie Brady
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    Oct 23rd 2017, 2:00 PM

    He is here clay pigeon shooting in Killarney seems to be in a calm state so everyone relax he had a bad morning

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    Mute Chris Turner
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    Oct 23rd 2017, 3:16 PM

    And he’s not even Muslim what are all the racist bigots going to talk about now ?

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    Mute Pat Price
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    Oct 23rd 2017, 3:27 PM

    @Chris Turner: Well its wide open for the Tallaphobes , Journal must be deleting most of them though, poor gits ,

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    Mute Kenny Wolf
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    Oct 23rd 2017, 8:07 PM

    Is this real life or a ‘Grand theft Auto’ mission on the PlayStation? Hard to tell.

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    Mute Matt Beaumont
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    Oct 23rd 2017, 11:46 AM

    Hope they shoot the fool!

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    Mute Terry Cahill
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    Oct 23rd 2017, 1:33 PM

    Heil Kevin !

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    Mute Clare Leon
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    Oct 24th 2017, 1:22 AM

    ‘It’s believed the series of events may have begun as a domestic row.’ When will the media stop peddling the belief that male violence is caused by, and is a valid response to, ‘domestic’ arguments?

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    Mute Zx5vZulB
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    Oct 24th 2017, 2:28 AM

    When you are playing grand theft auto on acid and suddenly sheet gets real

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    Mute Tony Le Blanc
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    Oct 24th 2017, 12:05 AM

    F*ckin hell, Robo-scober

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    Mute pat maher
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    Oct 23rd 2017, 7:48 PM

    Up the dubs

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    Mute purple rain
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    Oct 23rd 2017, 11:35 PM

    Ah here leave it out. Oh mammy.

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