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In an letter emailed to all members of the Oireachtas last night, Gerry Edwards, a father, has written about his experience as a parent of a child with a fatal foetal abnormality. He remembers how the joy at his wife’s pregnancy quickly turned sorrow – and how they were forced to leave the country “like fugitives fleeing the state” to bring that pregnancy to an end.
He calls on all members of the Oireachtas to listen to his story…
Dear Member of the Oireachtas,
In October 2000 my wife and I celebrated our first wedding anniversary. Within a week we found out we were expecting our first baby. Imagine our delight – we would no longer be a couple, we would be a family. We immediately told our families and there was great excitement.
At the beginning of February 2001 we went to Holles Street for our 20 week scan and were taking note of crèches on the way that would be close to where we worked. We were projecting so much, where s/he would go to school, what would s/he do for a living etc. I assume this is normal.
When we were having our scan we didn’t notice the student ultra sonographer leave the room or that the midwife had stopped talking and was concentrating on taking a variety of measurements from different angles. I do remember thinking ‘it looks a bit like E.T.’ because there was a straight line above the eyebrows – I assumed the rest of the head was being hidden by some tummy or other tissue. I didn’t understand then how ultrasound scans work. The obstetrician on duty, not our own, arrived in the room and took more measurements and eventually asked us to come with him. We were brought to a small room with soft lighting and a box of tissues on the table. It began to dawn on us that something was wrong, but nothing could have prepared us for what we were told.
It was explained to us in a matter of fact manner with a coating of empathy that our baby had anencephaly (we never heard of it) and that it was a condition which was incompatible with life (we didn’t understand) and eventually that our baby had no prospect of life outside the womb – none! They were very sorry and there was nothing they could do for us in this jurisdiction. At some point we left. We knew nothing more. We contacted our employers and said something was wrong with the scans and we couldn’t make it to work that day. We then went home to our internet dial-up to see what we could find out about anencephaly ourselves, including how to spell it.
We eventually understood that our loved and very much wanted baby would never live so we contacted our parents to try to explain. I will never forget trying to tell my mother this news over the phone. Our parents called to our house immediately, but what could they do? They were just as devastated as we were, they could see our pain but couldn’t make it go away.
We discussed whether or not to continue the pregnancy. It was made clear to us that none of the hospitals here could offer us a termination. My wife was saying she couldn’t go back to work, she couldn’t go to the shops, that she didn’t want to go out at all, because she was obviously pregnant and people kept coming up to her and congratulating her, touching the bump and wishing her well. How could she respond? These people were well meaning and behaving in a normal manner, but every recognition of her pregnancy only served to remind her that our baby was doomed. The psychological toll was immense.
We arrived at the conclusion that the best thing for us was to bring the pregnancy to an end and we could try again as soon as possible. We even went to see a psychiatrist and our GP just to make sure that despite our grief our thought processes were still rational. We eventually, through our own devices, managed to be seen for a second opinion in a UK hospital.
The diagnosis and prognosis were both confirmed. It was even described as severe anencephaly. I remember asking how come there were degrees of fatal, and they explained that the extent of the damage was severe – the skull was missing from above the eyebrows to the back of the ears and down to the nape of the neck, and what brain tissue had formed had been exposed to attack from the amniotic fluid. The rapid movements within the womb my wife felt were most likely reflex movements caused by the joints hitting the wall of the womb in flotation rather than being any cognitive or deliberate movements that usually occur in pregnancy.
There was no doubt, we were not talking about disability, which at this stage we were hoping for, but were talking about fatal foetal abnormality. Having discussed our options with this hospital we confirmed it was our wish to bring the pregnancy to an end and we made an appointment for three days later.
The evening before we travelled my mother-in-law who was travelling with us came to our house and we watched an Andrea Boccelli concert on TV. ‘Con te Partiro’ (Time to Say Goodbye) will stay with us forever. We left early the next morning feeling very much like fugitives fleeing the state. We had told only our closest family and friends about what was happening because we were afraid somebody would try to get a court order preventing us from leaving.
The sense of betrayal, neglect and complete abandonment from this state is as acute today as it was over twelve years ago.
As with so many people whom we have met and spoken with since who have had similar experiences to our own, we were treated with all the care and compassion in the overseas hospital that we reasonably expected from our home hospital. My wife delivered our son Joshua on the 12th February by induced labour and my mother-in-law and I were both present.
His birth, like other stillbirths, was greeted by silence. There were no cries, except for mine, my wife’s and my mother-in-law’s. I didn’t look at my son because I knew of the extent of his condition and I didn’t want that to be my lasting memory of him. A young midwife took Joshua away to clean him and dress him, in clothes a family friend provided and a baby bonnet that would fit a tennis ball to hide his wounds. We never even thought of clothes.
The midwife later asked if we would like to see him. I went with her to a separate ward where she had dressed him and placed him in a small wicker Moses basket beside a soft table light. She waited outside to allow me some private time with my first child – he looked so like me! I then brought our son to meet his mother and grandmother. It was such an emotional time. The same midwife then said something which was so important for us, then and now. She said ‘No matter what anyone tells you, you’re a mammy and a daddy now”, and we were. The hospital brought dinners to the three of us and we ate together with Joshua in his basket beside us – our only family meal.
Afterwards a Catholic chaplain visited us at our request and had a naming ceremony. We couldn’t get a Christening or Last Rites because he was stillborn. We similarly couldn’t get Birth or Death Certificates because Joshua was less than 24 weeks gestation when he was born. My wife also did not qualify for maternity leave for the same reason and ultimately went back to work sooner than she was ready, although her employer was very sympathetic.
The next day we had to return home – without Joshua. My wife’s father and my parents never saw their grandson. His extended family never got to kiss him goodbye. None of our family or friends were able to come together to recognise his existence and support us in our loss, which are all things that should have been able to happen.
Instead, Joshua was cremated alone in a different country to all of his family at a date and time we knew nothing about, and his cremated remains were delivered to us by courier in a cardboard box in a padded jiffy envelope.
Neither of us had yet returned to work when the courier arrived and I answered the door. My wife was still in bed but saw the van outside and knew what was happening. I could hear her wailing from upstairs as I signed for our ‘package’. What kind of husband was I that I couldn’t protect my wife from this pain? What kind of father was I that I couldn’t even give my dead child a proper funeral, that left him behind in a foreign country and dragged his mother away from him?
I know that I am supposed to recognise these things as being issues which were beyond my control, that I should accept them and move on, but I cannot. I can accept only his medical condition and it’s inevitably fatal consequence as being beyond my control, or the control of any person or society generally, but all of the associated anguish caused to me, my wife and our parents among others, I can never accept. I can never forgive this little country for having placed us in that position by denying us the right to bring forward the end of this doomed pregnancy here, and allowing us to grieve normally, to publicly recognise our baby and to have a grave that we can visit.
I have never been able to publicly write this before for a number of reasons – that I was afraid of public condemnation, even of physical assault from some; but mainly because I couldn’t face recounting what happened, how I felt and how I continue to feel. In fact, I still cannot be certain that I am recognising the emotions enough because my instinct is still to bury them to, as I perceive it, protect myself.
I feel however, that I must write this because so many mothers, including my wife, have shown such courage in coming forward with their stories and experiences and bringing about a much broader public awareness and understanding of fatal foetal abnormalities and what is being experienced by so many couples on an ongoing basis in a country of this size. Also, so few fathers have shared their experiences, possibly for some of the same reasons I hadn’t previously, that this whole discussion runs the risk of being regarded as a women’s issue when in fact it is a parent’s issue.
Mainly though I am writing this because I am appalled that over 12 years after Joshua was born, thousands of parents have already been faced with the same difficulties, and so many more will be.
Nothing can be done to prevent babies from developing these fatal foetal conditions, but this cannot excuse why even getting information is a lottery depending on which hospital you attend, who your obstetrician is and what questions you ask. That the choice of bringing forward the end of a pregnancy that is incapable of delivering a life is only available to those who have the means to travel abroad to avail of the service privately is shameful, and at the cost of either leaving their baby behind or attempting to smuggle them back in their hand luggage or the boot of their car.
We as a country are now in the position where our Government declined to include Fatal Foetal Abnormalities in the Protection of Life During Pregnancy Bill, and will not put forward an amendment to the Bill when passed that can be independently tested. A few in Government have spoken about the need for a referendum to cater for these circumstances, a few more have expressed support for one, but not in the lifetime of this government. None are actually calling for a referendum. Is this country going to have to wait another twenty years to get the opportunity to vote, while thousands more are going to have so much unnecessary heartache and suffering added onto the grief associated with the loss of their babies.
The story of me and my son Joshua is not special. It is not a story you will have heard often but it is not unique. It is shared to a greater or lesser extent by too many people and in the absence of change will be shared by too many more going forward. Have the referendum now! The Government has probably lost all the members it would otherwise lose already. Don’t make people suffer when it is in your gift to do the right thing.
Yours sincerely,
Gerry Edwards
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Houses don’t disappear when they are repossessed. They can be sold on or rented to someone who will pay. Conflating this with homelessness is nonsense. The lawyers are making our like bandits as usual because the judges think they make the law instead of enforcing it
@Goban Saor: Actually, Judges interpret the law. Gardaí, and other bodies who have been given power by the legislature, enforce it. (eg, Director of Corporate Enforcement, Environmental Protection Agency, DCC Clampers, Dublin Bus ticket inspectors, litter wardens etc…)
@Goban Saor: better a pedantic plonker than a raving fool.
TD’s should take heed, especially those currently in power who have had years to sort this out but delivered nothing. NAMA has to go, it is an abject failure which has enabled the vultures rather than assisted the citizens of the state. Hindsight is great when looking for reasons on who to blame, it is our current FFG led government who had no foresight and know find themselves in a situation where over 10,ooo people are homeless.
@Ian McNally: Neither are all the County registrars who pretend and act like they are Judges when issuing possession orders. Then the self same person goes and acts on the possession order he just issued, but this time acting as sheriff. Seems like a fixed system methinks.
It’s a bit late now! Gombeen TDs throwing shapes, looking to be seen to be doing something instead of actually doing something.
Where were these “great” fellas during the last few years when the vulture funds were actually repossessing people’s homes!
@Adrian: Remember the Cork minister whose Daddy was also a minister before him who made a promise on national radio last year that he would deliver 900 affordable housing units and only 9 were built? Or the Galway councillor who got his grubby hands on an affordable home and is now renting that same home to enrich himself? Now they are pretending to care because a general election is on the horizon, lying thieves.
@Adrian: So folks who couldn’t be arsed paying their mortgages shouldn’t have their property repossessed?
@Frank Cauldhame: like Dippity Dooley, he’s never seen in the dail, but if some controversary comes up about Clare, he takes over Martin’s seat in the dail chamber and I can never remember what he says because it’s s#!t talk, but his gestures and waving arms all over the place and his throwing shapes I remember because it’s something to behold!
@MK76: yeah just like the banks who couldn’t be arsed paying there debts .. get the people to pay it ..
@Adrian: They blame people who are struggling and struggled to pay their mortgages instead of looking at the picture as a whole, like its mortgage holders who caused the crash of the elitist bank Anglo and the bailout that was forced upon innocent Irish citizens to keep bondholders happy.
@Adrian: vulture funds are friends of our government since old graveyard face Noonan. Nothing will change,nothing.
@Adrian: It’s never too late to stop a crises, excuses like that would make you a great politician. Id sort it but sure it’s too late, no point.
Thank you John but you are 8 years late with your bill. The horse has bolted with Noonan on its back.
@Gareth Cooney: Not really, barely any repossessions yet which is what is causing a huge bottleneck and bubble in Ireland.
Needs to be sorted asap so the market can be managed more fairly.. Move out if you cant pay. Hearing that some mortgages not paid for over 2 years…shocking…what are people doing
@Darren Norris: the lack of repossesions in Ireland / even in cases where the mortgage is totally unsustainable is another factor in foreign banks NOT opening in Ireland thereby keeping the variable rates charged on mortgages in Ireland artificially high.We pay roughly double the variable rates of most European countries
@Darren Norris:
Saving lots of lovely money!
@Frank Dubogovik: What you said is not the reason Ireland pays higher interest rates. It is a false meme spread by the banks and our govt, and too many people in this country have fallen for this big lie. The reason the Irish banks charge more than the European rate is because Irish banks are attaching a premium to compensate for loss-making tracker mortgages. If you have a Tracker, the banks sees your mortgage as an NPL, even if you have never missed a payment. But the banks don’t want to say this is the reason for charging the higher interest rates. It is easier for them to spread the big lie that it is all the fault of distressed mortgages. This way, they get everyone to turn on each other instead of putting their anger where it should be; with the banks who are pissed off thag they are making the profit they think they are entitled to because of trackers. And people like you fall for it every time. Based on your logic, we should all be blaming people who jave tracker mortgages. Grow up.
thag they are making = that they are not making the profit
@Ron O’Keefe: Well said, that is the truth. On another note what ever happened to the Anglo subsidiary that was sold to a private Swiss family?
@Ron O’Keefe: you’re right. That is one reason. But if the market was free and banks could repossess homes then foreign banks would enter the market and undercut the Irish banks. Irish banks would then cut their rates or go out of business. If they went out of business then people would be moaning that vulture funds/foreign banks owned the mortgages.
@joe: ‘go out of business’ – yeah right – cos that’s what happened in 2008 right…
These guys play by different rules.
Anyway, the attitude of wishing to see thousands turfed out of their homes by the very architects of the disaster just so you MIGHT save a few sheckles on your interest payments speaks volumes.
@joe: It isn’t one reason. It is THE reason. Banks repossessing or not repossessing have nothing to do with it. There isn’t a free market here with more competition because this is how the Irish banks want it. As for the distressed mortgages you say they can’t repossess; the banks were already subsidised for every one of these mortgages when everyone one of us in this country bailed them out. The banks are out nothing. Why do you think they have been sitting on these houses all these years?
More nonsense from Ed the Head the Ball. The clown isn’t elected by anyone and shows blatent disregard for the law.
The people who will benefit most from this are chancers who won’t pay their mortgages. Pack up and move, it’s what the renters have to do when they cannot pay
@Goban Saor:Nearly a decade later & you’re still harping on about this …Homeowners have spent 100′s of thousands of pounds on their properties.They also could be left with a huge debt after they’re evicted from that property…What have renters spent on the property that they’re living in ? Does the banks hound them afterwards ?
@Francis Mc Carthy: nearly a decade later values have recovered and people who bought at the peak and kept paying their mortgages are mostly out of negative equity. Still there are a few die hards who think the world owes them a free house ( and not a council house – in a middle class area, thank you very much)
@Goban Saor: You really have no idea what you are talking about. And if you think the banks are giving people free houses just because their mortgages are distressed, you are clueless.
@Goban Saor: Why are you telling me this ? I just responded to you whining about renters and how “tough” it is on them….
@Francis Mc Carthy: You got it all wrong. You are not a homeowner and you are not spending on your property if you are paying a mortgage. Simple.
‘they can go down the “tired old political route that is stale and out of date” and make excuses, or they can get involved with the legislation’…. Irish politicians? I’ll believe it when I see it!
@Sarah Bourke:
Summer holidays coming up make it look good, They don’t want it in the neck from us the great unwashed TAXPAYER.
Sadly cowardly TD’S Will duck and dive, especially FG one’s, the party of drop kick every problem into someone else’s court. The master of the high court is to genuinely commended, he actually seems to be the only person in the entire legal system who cares like etc alone what is going on because of this governments actions.
Fair play to Mr Honohan and Deputy McGuinness for make this effort to address this terrible crisis. At least it will put a lot of TD’s on the spot to see what they will do.
Maybe Sean Gallagher will look for support from the County Councils for it, as well as for his other urgent problems.
A judge doesn’t have knowledge of economics because he knows the law. It is very simple somebody ends up paying when houses aren’t repossessed. Generally it will be the banks and that is why we have such high mortgage charges here. Make it more difficult and charges go up again.
@Kal Ipers: He’s not a judge. He’s master of the high court. Now then, who were we accusing of having no knowledge?
@Matt Connolly: My point remains and I am not writing a document on the judicial system and the roles of people within it so irrelevant I misnamed his title.
@Kal Ipers: kinda like not letting facts get in the way of a good story, right? ;)
@Matt Connolly: nothing like it. It really doesn’t matter
@Kal Ipers: The reason you gave for why Irish banks charge higher mortgage interest rates is a complete lie spread by people like yourself who a) perpetuate this lie because of your own agenda or b) you are just dumb enough to believe this lie.
And in case you forgot, the banks were already subsidised for these distressed mortgages when we bailed them out. The banks are out nothing; not one penny. The banks are double dipping.
@Ron O’Keefe: You got this somehow wrong. I agreed that troubles with repossessions are not the only reason the rates are high in Ireland. Trackers are the culprits too. But why Banks charging such high interests? Because they can – that’s a market for you. And why they can? Because there is no real competition in Ireland. And why is that? Because the foreign banks are reluctant to do mortgage business here because of the difficulties with repossessions. Nobody will risk a business in the environment where it is so difficult to get your money back.
@astjan: Firstly, these potential repossessions everyone is so freaked out over are very few. Secondly the reason for the difficulty is because these mortgages have already been subsidised by us when we bailed them out. And most of these distressed mortgages are being paid on. The banks are trying to double dip by reposssing. Not having foreign banks in this country as competition is of the Irish banks own purposeful making. They don’t want the competition.
As for your because “they can” analysis, where is the EU? These things are supposed to be regulated. But as usual, everyone cherry picks.
You are just wrong on your repossession theory.
@Ron O’Keefe: very few? Go and visit the courts around the country, do some research over the last year or so…. your having a laugh!
Why are mortgage rates so high? Because there’s SFA competition in the Irish mortgage market. Does anyone think there will be new entrants when a bank cannot get it’s money back by repossessing a property? Cynical fools. Supply, supply, supply is what is needed in Ireland
@Goban Saor: Try to get this thru your head; mortgage interest rates have nothing to do with repossessions. The banks were already subsidised for these distressed mortgages when we all bailed them out during the recession. The banks are out nothing. They have lost nothing. This is why the banks sat on them all these years. They were waiting for the housing market to recover so they could make even more money off of something they have already been paid for, by the people of this country.
@Ron O’Keefe: well said: so tired of these commentators who have no clue as to what the banks are at.
General election scpeake.
The banks did absolutely nothing at the start of the crisis because the value of property was on the floor and they would never recuperate their ‘losses’. Roll on a few years and government policy means that the good days for the banks are back. Noonan was the right man for the job. About to retire so that his re-election wasn’t a problem. I’ll never forget his ‘sew up yer pockets, lads’ comment. Utterly vile.
Any vulture funds donating to political parties? Below the threshold with multiple shell companies ? Any vulture funds investing in companies linked to any public figures ? Any public contracts with no work done ? Northern vulture fund story disappeared fairly lively. Remember there is tax to be paid and ‘tax’ to be paid . A great country to do ‘business ‘.
Must be an election on the way ,big fan of john mc guinness but its getting a bit late in the day to expect miricles ,however saying that any discussion is welcome on the subject .interested to hear what some of our TDs are thinking or hiding
You can be sure the parties in the left won’t engage as this new bill appears to be positive. The left will always swing to the negative.
@Me Darlin’ Dublin: Let’s see how the rest of FF vote &FG!Yes,basis of Bill seems very sensible and positive,let’s see the detail now!
@Nuala Mc Namara: https://www.oireachtas.ie/en/bills/bill/2018/77/
Today In the dail bar,, ” I’ll come out in favour you come out against lol” they haven’t a clue what’s going on, do ye want another pint theyre paying lol
We live in a quite Country there applauding this man in the Dail as he try’s to stop Vulture Funds from literally taking peoples home for next nothing and across the road in the Courts they are letting the Bank officials that had a big part to play in bringing this Country to its knees are walking free with their big pensions and a little tap on the wrist .This would not be tolerated in any other Country in the world.
Some details rather than soundbites would be nice.
Say no to the taxpayer supporting people who dont think they should pay for their home.
I think there is something wrong in this country when I pay more tax than a vulture fund. I think there is something wrong when 9 billion that was put aside to help out distressed mortgage holders cannot be accounted for. I think there’s something wrong when these funds buy mortgages at a discount of 70%.
Loads of people on here saying if you don’t pay then be evicted, great idea lads, let’s add to the 4k kids currently homeless!
Government needs to call this a national emergency. Instruct the state owned banks to sell to the councils at the same rate as the VF’s and make the VF’S pay a proper rate of tax on their profits. They are contributing to the problem so the least they can do is pay a decent amount of tax!
Must be an election on the horizon
I’d be interested to hear the Bill debated in the Dail.
I’m not a FF voters but respect John Mc Guineas& Master of the High Court.
YES
Absolutely stupid idea. If people don’t pay their mortgage they should be evicted!
@joe: You really don’t get what is going on. People like yourself need to get a grip on exactly what the banks are doing.
A nation once again.
10,000 mortgages with 5 years arrears that’s the problem that needs to be tackled the hand full of repossessions where abandoned or keys handed back
If you can’t afford your mortgage then you need to sell up to someone who can.
If you can’t afford your car you lose it.
Anyone have a link to where we can read the bill?
@Mark McDermott: https://www.oireachtas.ie/en/bills/bill/2018/77/
People don’t disappear when they’re made homeless. The state is still obliged to find shelter for them.
have your say