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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 Maurice Danaher
    Favourite Maurice Danaher
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    Sep 2nd 2014, 5:28 PM

    Current national debt is circa €190B. Is Noonan giving up on getting the ECB to finance the Bank debt and get it deducted from the €190B. This was one of FG’s election promises. The real national debt figure is probably close to €500B if we were to accrue all PRSI pension liabilities. Yesterday’s article in the Sunday Times is frightening on this.

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    Mute Winston Teardrops
    Favourite Winston Teardrops
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    Sep 2nd 2014, 5:33 PM

    Why would they include future liabilities? At that rate you could bring future expected revenue into the equation!

    61
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    Mute Emily Elephant
    Favourite Emily Elephant
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    Sep 2nd 2014, 5:40 PM

    Because as from 2017, we have to account for unfunded liabilities to give a true picture of national debt. Just as companies have had to do for years. There’s no real difference between a bond you have to repay and a pension you’re committed to paying, except in accounting terms.

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    Mute Maurice Danaher
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    Sep 2nd 2014, 6:01 PM

    Well said. Couldn’t have put it better myself.

    19
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    Mute Kate Ellen Egan
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    Sep 2nd 2014, 6:04 PM

    Where will the money to fund these early repayments come from ? I know it’s a stupid question but does anyone know the answer ?

    11
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    Mute Robin Tobin
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    Sep 2nd 2014, 6:11 PM

    Maurice the minister is doing lip service for the next election. Europe is in receivership and has told Noonan no to what you have noted. It would be nice but our politician didn’t talk hard they were the good boys in the class. So Europe expects them to keep paying.

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    Mute Alien8
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    Sep 2nd 2014, 6:15 PM

    They will be coming from 15 year loans/bond issues so the banks will be lending this money to repay them back early.

    10
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    Mute VoiceOfVanguard
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    Sep 2nd 2014, 6:23 PM

    Wait ’til Ireland doesn’t get the retroactive bank recapitalization.

    And when – not if – new international corporate tax rules take effect from 2016 (OECD), at least €50 billion, or half the annual value of services exports will be vapourized.

    Plus, some multi-nationals have also said they will leave when that happens i.e. when they have to start paying a lot more corporation tax back home on top of high wages in Ireland.

    Hold on to your tin hats.

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    Mute Richard Rodgers
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    Sep 2nd 2014, 6:28 PM

    Emily
    Perhaps now the penny might drop when we consider the point John Bruton was making when discussing such liabilities recently.!
    He was massively abused on this site when his opinion about defaulting by the State on pensions etc when the alternative was bankruptcy .
    How quickly we shoot the messenger in Ireland rather than trying to deal with realities.

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    Mute SeanieRyan
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    Sep 2nd 2014, 8:14 PM

    Still think that a debt deal will have to be done.

    The EU live in a fantasy world where real economic reality is denied and put on long finger.

    They blew their chance to resolve the Euro crisis.

    11
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    Mute Ben Gunn
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    Sep 2nd 2014, 8:32 PM

    That would apply to unfunded civil service pensions but not to PRSI pensions. That liability is subject to year by year legislation and, in theory, could be reduced or abolished by a new Finance Act. It won’t happen of course, but the possibilty means that it is not a reckonable long term debt.

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    Mute Stephen Brady
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    Sep 2nd 2014, 8:47 PM

    What do you mean give up, they didn’t even ask for feck sake

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    Mute Kerry Blake
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    Sep 2nd 2014, 9:48 PM

    ohhh I feel another seismic shift coming on….

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    Mute Huggy Bear
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    Sep 8th 2014, 9:12 AM

    Property tax
    Water charges
    USC
    ….any if these terms familiar to you????

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    Mute IrishGravyTrain
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    Sep 2nd 2014, 5:21 PM

    No financial penalty for paying off loans early. Ha ha. We should be getting a discount for paying early.

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    Mute Winston Teardrops
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    Sep 2nd 2014, 5:30 PM

    Don’t get into finance. I can tell by this one comment that it’s not for you.

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    Mute Tony Skillington
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    Sep 2nd 2014, 5:51 PM

    We should never have had them in the first place…ffs

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    Mute Peter King
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    Sep 2nd 2014, 5:23 PM

    Getting a bit annoyed with this sycophantic attitude the government has with Europe.

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    Mute John Deegan
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    Sep 2nd 2014, 5:38 PM

    What, you feel no surge of patriotic pride when our minister begs the faceless financiers to kindly allow us to give us a big ball of cash?

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    Mute John Deegan
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    Sep 2nd 2014, 5:39 PM

    * you a big ball of cash *

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    Mute Mike O Neill
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    Sep 2nd 2014, 6:00 PM
    7
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    Mute Richard Rodgers
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    Sep 2nd 2014, 6:39 PM

    Peter.
    What a brain and what a genius. Please tell us how yo can save the State a cool three hundred and seventy five million Euro a year as proposed by Minister Noonan so that we don’t have to politely ask our creditors for agreement to vary the terms of our Bailout.
    You must be a whizz with figures and I envy the confidence with which you stride across these pages.
    I showed your comments to a colleague and I could see straight away that he misunderstands you. In tact what he said about you couldn’t be printed here but all great men Peter suffer from such slingshots!

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    Mute Paul Mc
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    Sep 2nd 2014, 8:09 PM

    @Rodgers as per usual your wisdom knows no bounds you and your comments are wasted on the journal.
    Its time you took up your true vocation and that in my humble oppinion is that of chief Fine Gael ass wipe.

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    Mute Richard Rodgers
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    Sep 2nd 2014, 8:22 PM

    Paul
    Thanks! Your opinion in your own words is indeed humble and it is quite clear that you never aspired beyond that though instinct probably told you that there was enough material in you to heft a Sinn Fein shovel but you would need to be told what to do after that.
    The world needs simple folk Paul and at least you have recognised that!

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    Mute Stephen Grehan
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    Sep 2nd 2014, 8:37 PM

    Well said Paul Mc. When Rodgers is in the company of Edna its like a scene from the film The Human Centipede.

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    Mute Thomas Newell
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    Sep 2nd 2014, 9:09 PM

    hows life as the chief arse kisser and male cheer leader to enda and his brigade richard cos clearly you are one of them patriots big nose hogan was on about

    10
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    Mute Kerry Blake
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    Sep 2nd 2014, 9:54 PM

    So Richard hows that seismic shift of Enda the statesman performing these days?

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    Mute Richard Rodgers
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    Sep 3rd 2014, 12:01 AM

    Kerry
    Whaaaaaaaaat?

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    Mute E=MC2
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    Sep 2nd 2014, 5:58 PM

    When the cost of Noonan’s very generous minster’s pension to which he does not contribute a cent is added to the debt it could be the last straw that breaks the taxpayer’s back.

    36
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    Mute Phillip Hogan
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    Sep 2nd 2014, 5:23 PM

    Wow, we are so lucky.

    25
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    Mute Alien8
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    Sep 2nd 2014, 5:53 PM

    Looking at the returns, it is all rosy for Noonan – revenue’s new mantra is to suck every last penny of savings and profit out of small business and their employees and to present it as a gift to some unelected ex-politicians and expect a pat on his obnoxious head.

    “Look what I brought you – someone else’s debt, maybe I’ve ruined a few small businesses and taxed earnings and savings from Irish people to the hilt, but as long as we’re all happy let’s make this look like good news to the ‘media’ – you’ll print it like that, you property funded news website”…

    36
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    Mute Ger Ryan
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    Sep 2nd 2014, 7:29 PM

    At the end of the 1st 1/4 2008 this country was heading towards a deficit of 22bn euros. In d last 5 yrs we have undertaken a huge social experimenr in how to balance d books without strikes/riots etc and we have nearly made it. There is huge credit due to fg and lab and enormous credit due to d dept of finance and public expenditure.

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    Mute Stephen Brady
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    Sep 2nd 2014, 8:52 PM

    Why should lab and fg get any credit. Ff told them what to do before they got booted out.

    11
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    Mute Colin Mccormack
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    Sep 3rd 2014, 3:53 AM

    How is it any credit to them, it’s a credit to the irish people not the politicians. The politicians didn’t stop riots they hid away in Leinster house and quietly stripped us of our pride and dignity and left most of us demoralised and close to bankruptcy. Suicides are through the roof, let’s see these magnificent politicians of yours deal with that elephant in the roof. Crime.? It’s bandit country in ireland again, those shower deserve no credit for anything.

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    Mute Ger Ryan
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    Sep 3rd 2014, 7:22 AM

    The simple fact if the matter is that this country of 4.5million people withdrew over 16bn from circulation over the past 5 years. Politicans put their names forward as spokespeople for that. You didnt. You come on forums and talk abt how bad it is. Pokiticans arent stupid or even greedy anymore. They all know the suicide numbers, the high taxes, the unemployment but they still put their names forward. You didnt. it is easier spew vitriol from d sidelines

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    Mute Alan O'connor
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    Sep 2nd 2014, 6:06 PM

    More bad news for the Shinners. Tax take up. Ahead of forecast.

    Where are the Shinners anyway?

    I suppose it’s hard for them to spin positives into negatives. Especially when there’s an election coming up. Just doesn’t appeal to voters.

    But it’s all they have.

    21
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    Mute Thomas Newell
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    Sep 2nd 2014, 9:13 PM

    so anyone that has a different opinion to them muppets in power are shinners………explains the mental state of the cheerleaders for the likes of the FG/LB/FF crowd on hear…..deluded one trick ponies who believe anything that comes out of the lot in the dail

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    Mute John Hartigan
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    Sep 2nd 2014, 6:08 PM

    Election spew has started

    21
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    Mute Nosmo King
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    Sep 2nd 2014, 6:11 PM

    ” Noonan ” and ” charm ” in the same sentence !! . It is just so wrong, Jack Horgan-Jones. Just so, so wrong.

    16
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    Mute VinHeffer89
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    Sep 2nd 2014, 6:05 PM

    Will Mr Noonan be dancing suggestively for Mario Draghi et al as well?

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    Mute Susan Adair Farrelly
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    Sep 2nd 2014, 8:54 PM

    Charm?? God help Europe…

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    Mute Jarlath Murphy
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    Sep 2nd 2014, 5:41 PM

    Jam?………………………………..
    ‘…………………………?…………….
    ……..?………………………………….

    NEVER!

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    Mute DM
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    Sep 2nd 2014, 6:16 PM

    Why was my two comments deleted?

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    Mute Brehon Law
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    Sep 3rd 2014, 8:16 AM

    Just in time for the general election!

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