Termination in Cases of Foetal Abnormality: Termination for Medical Reasons Ireland

I welcome members back to the third session of today's meeting of the Joint Committee on the Eighth Amendment to the Constitution where we will receive a presentation from Termination For Medical Reasons Ireland.

Senator Mullen has written an email to me today in response to Dr. Peter Boylan. I have not had the opportunity to read the email properly because I am focused on what this committee is doing here today. If the Senator would like to read it to the committee I will allow that.

I thank the Chairman. I am very grateful to her for affording me this opportunity and I will be brief.

I note that Dr. Peter Boylan sent in an email today just before the Committee met, relating to last week’s proceedings. I also note that you read his email into the record at today’s first session of the Committee. [I have no problem with that] I believe that Dr. Boylan has misrepresented me and that nothing that I said was at variance with the facts ... Dr. Boylan claims that I "made several assertions at odds with the facts" at the Committee hearing at which he appeared last Wednesday. He only attempts to provide one such assertion and even there he doesn’t manage to bring his claim home.

I said at the Committee that the doctors involved in the Savita Halappanavar case "did not claim that it was down to the law in Ireland but that it was down to the mismanagement of a situation". My point has been, and remains, that the doctors involved in that tragic case did not try to blame the law in Ireland for what happened to Savita, but rather that they acknowledged the medical mismanagement of her sepsis. I have been critical, and remain so, of campaigners who try to exploit Savita’s death to bring about the legalisation of abortion, when it has always been the case that any life-saving treatment a mother needs, including treatment that brings her pregnancy to an end, is legal and is routine practice.

In support of his claim, Dr. Boylan draws attention to a transcript of the inquest and in particular to a section in which the consultant in the case was asked if she felt "constrained or inhibited by Irish law" and her answer of "Yes. Because termination of a pregnancy which is what she was requesting, is not legal in the context in which she requested it". The doctor had just stated that she understood the late Savita was "not physically unwell" and because "the law states that in the absence of risk to the life of the mother there is no reason to intervene". At a later point in the transcript, the doctor says that, had she been aware of certain physical symptoms which had been noted earlier, she would have intervened. So it is clear that the doctors never sought to blame Savita’s death on their being unable to give necessary treatment because of the law in Ireland. My presentation of the facts at the Committee was therefore completely accurate. Dr. Boylan shouldn’t misrepresent my words.

It is noteworthy in passing that several obstetricians and a consultant in emergency medicine have taken issue in public with Dr. Boylan’s opinion that Irish law prevented necessary treatment to save Savita Halappanavar’s life - see Irish Times Letters, 1st May 2013. They suggest that Dr Boylan’s view on this matter is "a personal view, not an expert one".

That concludes that portion of the statement I issued today relating to Dr. Boylan's comments. I am very grateful to the Chairman for giving me the opportunity to put this on the record promptly. Because the committee will not meet next week two weeks would have elapsed before I had the opportunity to take issue with what Dr. Boylan had said in his complaint.

I thank Senator Mullen. Both pieces of correspondence are on the public record now. It is up to the public to make judgments on Dr. Boylan's and Senator Mullen's comments. There is a potential for Dr. Boylan to seek to reply once again, thereby creating a cycle of correspondence, which I would like to avoid, as I said to Senator Mullen before the meeting. For the moment we will leave it there.

I did not know that this was going to come up in public session. The matter came up in an earlier session, and if the person wanted to reply he should have raised it there. Things have just been said that are completely and utterly refuted by Professor Sabaratnam Arulkumaran, who actually conducted an investigation and did not just read the notes. It is quite upsetting that this is constantly being brought up in the week when this woman's family must relive the nightmare of what happened. It is her family that wanted social change arising from her death. It is very awkward; who will answer all this, and who will address these untruths and misinformation?

That is my point. When I explained the scenario to Senator Mullen he appreciated that it is likely to be a tit-for-tat situation on the issue, and I am not being frivolous in my language. Deputy Coppinger has quite rightly pointed this out as an issue.

We do not want to end up in a situation where the committee's public session every week has clarifications sought and given, which then require further clarifications. Some of the commentary about the late Savita Halappanavar is very distasteful, to say the very least. I do not believe that the committee should be consistently referring to this woman who tragically died as if she was just a statistic and in such a harsh, cold and clinical way all the time. We should now listen to the witnesses who are before us this evening.

I could not agree more.

Since I have been criticised by two members of the committee-----

I did not make reference to the Senator. I was speaking about the committee.

I assumed that Deputy Kelleher was not referring to me, so I thank him for clarifying that. Dr. Boylan's email reached me very shortly before the committee today. It is the Chairman's call to read it into the record so soon. As I have said, I have no issue with that. A longer period of time has elapsed before I got my response in and this is why I am very grateful to the committee for allowing me - in the spirit of fair play - to not have to wait two weeks before rebutting what I regard to be a completely ungrounded criticism. That was my only reason. I am sorry that Deputy Coppinger wishes that I had emailed the whole committee at the time I emailed the Chairperson today, but I thought that this decision seemed to be in the remit of the Chairman. I too want to apologise to our guests today because I have no wish to hold up their presentation.

There is a lot that I would like to say but I shall restrain myself and ask that our witnesses speak to us. I welcome Mr. Gerry Edwards, chairman of Termination for Medical Reasons Ireland, and Ms Claire Cullen-Delsol, also from Termination for Medical Reasons Ireland.

Mr. Gerry Edwards

We thank Senator Noone and the committee for extending an invitation to us to present to it today. Termination for Medical Reasons Ireland, TFMR, is a group of parents, mums and dads, who have all been affected by pregnancies where there was a diagnosis of a severe or fatal foetal anomaly. We were all denied access to the care that we needed as a direct result of the eighth amendment. Many of us had to travel to another country to access the care we needed, while others among us were forced, against our will, to continue our pregnancies in Ireland. All of us were forced to endure suffering above and beyond the loss of our babies because of the constraints this amendment placed upon us and our care givers.

TFMR has also provided emotional support to other women and families who have faced into similar tragedies and journeys for many years and we are privileged that some of them entrust their stories to us so we can share them today with the members today. It is, however, not just us who are behind the stories we will describe and the circumstances we will outline to the committee. Behind everything we discuss there are bereaved families and we trust that all the members will afford them the respect and dignity that they deserve.

We hope that our submission document and the contribution we make here will help each committee member to arrive at a fully informed position when they make their own recommendations at the end of this process.

We think it would be appropriate for us to start off by looking at the events which lead up to us having to make what is, without doubt, the most difficult decision of our lives. This decision is a deeply personal one. We shall present a fairly high-level view of the matters but have provided more detail in our written submission.

Most of us received our first indication that there was any problem with our baby's development at the anomaly scan. This typically takes place between 19 and 22 weeks of gestation. Others, who may have a history of foetal anomaly or are at increased risk, may receive earlier scans and some people pay for additional testing themselves. It is important to note that a lot of women do not have access to these tests at all.

Only about half of pregnant women in Ireland are offered anomaly scans. We heard this week that access to scans in Galway is due to be scaled back later this year or early next year. I am sure the committee does not need us to tell it how much of a shock it is to be really excited about a pregnancy in one moment only to have a doctor say there may be a serious problem in the next. In some cases, further tests may need to be performed to get a confirmed diagnosis. There may also be a need to refer to other specialties like cardiologists, paediatricians and neurologists. It can take several weeks to schedule all of these tests and to get results, and in some cases we may need to have them repeated over a period to see whether the prognosis for the baby is improving or deteriorating. Eventually, our doctors will sit down with us and explain in good faith and based on their personal experience what they believe is the most likely outcome for our pregnancy, that our babies are going to die or they will have a very seriously compromised quality of life. This prognosis will be based upon the results of our tests, what they have learned through their professional experience and the specific manner in which these anomalies have affected our babies.

It is devastating news to hear. Our hearts are broken and our worlds stop but it is so important that our doctors are frank and honest when they deliver the prognosis to us. It is important they do not sugar-coat the news with euphemisms because we must have a clear understanding of what our baby faces, and what we face, so we can accept and understand the reality and make an informed decision on how best to proceed.

The decision to either continue or terminate a pregnancy in these circumstances is very difficult for most people. To make it we need the best information available to us and we need to be able to discuss all options with our medical teams; most importantly, we need personal time and space to arrive at the decision we believe to be best for our baby, for us and our families.

It is important to point out at this stage that it is simply not possible for families to get that level of information, process it and arrive at a decision best for them within a 22-week gestation limit. We should bear in mind that those who get news at all may only receive an indication that something is wrong around that time. We propose the 22-week limit recommended by the Citizens' Assembly be set aside in the committee's consideration and there should be no time limit with regard to foetal or maternal health. We all want to hold on to hope for as long as we can and nobody should be rushed or judged for coming to the point where hope ends.

For those of us who chose to terminate our pregnancies and were forced to travel to lose our babies, we were basically left to our own devices. As our doctors could not do this for us, we had to find and contact overseas hospitals. We had to make our own appointments, get copies of our medical records and find fax machines, which is becoming increasingly difficult. We had to make our own travel arrangements and decide if we would go by aeroplane or by car or boat. How do we get from the airport or ferry port to the hospital? Who will travel with us? If we already have children at home, who will look after them? How do we get time off work? Do we have a passport and can we even afford it? It is also worth pointing out that when we go for an induced labour and delivery we have no way of knowing how long it will take and we cannot book a return journey. We have to wait until the process is over and then make separate arrangements. This adds to the stress and cost for the families involved.

It is worth reflecting in this context on the words of Mr. Justice Horner when he said that forcing women to travel in these circumstances "can have the consequence of imposing an intolerable financial and mental burden on those least able to bear it". He went on to say "the protection of morals should not contemplate a restriction that bites on the impoverished but not the wealthy. That smacks of one law for the rich and one law for the poor". Nobody in Ireland would support such inequality today. At a time when we are experiencing the most intense grief of our lives, we find ourselves in another country, often having left Ireland in secret, feeling like medical refugees. We are abandoned by Ireland - the State and its people - isolated from our families and friends and separated from the medical team that looked after us up to this point.

After the procedure, when we return, we need to figure out if we can bring our babies with us and, if so, how? If we have our car we can bring our baby home on the boat. This journey involves us having to go to a supermarket to buy freezer packs. These are like the types that one uses on sport injuries. We have to stop at regular intervals on the homeward journey, at petrol stations or supermarket car parks, to open the coffin and change the freezer packs so our baby's remains can be kept cold. This is so we can present our babies to siblings, grandparents, aunts and uncles when we return home at a funeral. When we cross the Irish Sea, we must leave our baby in the coffin in the car, either on the back seat covered with a blanket or in the boot. If we are coming home by ferry and do not have a car, we must use public transport; we would have to carry coffins on buses or trains from Liverpool, Manchester, Birmingham and London to Holyhead before boarding the Stena ferry. That is just inhuman.

If we are flying home, we may be able to bring our baby’s remains home but we must check in advance with the airlines and deal with the special assistance staff. We may need to place the coffin in a holdall or suitcase and check it in as luggage. This leaves us in a position where we must trust baggage handlers to treat our dead babies with the respect they deserve. Many people are afraid that simply will not happen. We could have to collect our baby's remains from a luggage carousel in Dublin, Cork, Shannon, Galway or Knock. Alternatively, we could take the small coffin on the plane as hand luggage. These are the circumstances that women and families have to go through literally within hours of giving birth. Women from this country have had to go through the normal trauma of delivery and the utter grief of losing a much-wanted baby before taking on this type of journey. How do members think it makes people in this country feel? Would they be comfortable with their family members or neighbours having to make a journey like that?

Sometimes we cannot bring our baby home as there may need to be an autopsy or results of genetic testing that will provide information about considering future pregnancies. As we are not in Ireland and we are not National Health Service patients, we have to pay up to £900 for an autopsy. We then have to arrange cremation, which we may not be able to attend because it involves another trip to the UK or further afield. We still have to bring our baby's ashes home to the family. Specialist courier services are now costing between £800 and £900 for delivery of cremated remains so most people travel back to the UK to collect them. This creates much additional trauma, as apart from cost, one must get back through airport security with a box containing the baby's cremated remains. Very often, that involves dads having to send mums through ahead as these people know a box with powder will show up on the security scanner and they must explain the origin of the box and why they are travelling home.

Even if we get our babies home, there are more logistics. How do we arrange a funeral when one is not coming from a hospital in Ireland? Can we get a priest to officiate? Some people are afraid to tell priests the truth as they are afraid of being judged and condemned. Others simply do not want to lie so they forgo the religious ceremony. Not being able to bring our baby home and not being able to have a normal funeral service, with the support of our family, friends and community, further compounds the sense of isolation and abandonment we feel. This is a process that is important not just for the parents to get closure, but for the grandparents, siblings and other family members too. It makes it almost impossible for us to grieve normally and leads to more traumatic, complicated and disenfranchised grief than would be expected if we were properly supported throughout this entire process.

Ms Claire Cullen-Delsol

It is often assumed the decision to terminate is black and white; a person will do it or not, depending on what she wants. There are those of us who wish to avail of a termination of pregnancy but do not travel.

Many families and women in Ireland continue a pregnancy, not because it is the right thing for them to do but because the ordeal involved in ending a pregnancy under the current regime is too arduous. We may not be able to afford to do so. As Mr. Edwards stated, there are the costs of flights, which may involve up to three round trips, accommodation, the procedure, a post-mortem, cremation and transport home of the baby's remains. These may amount to as much as €4,000 for each couple, which is a substantial sum of money for most families. It is certainly a massive sum for my family. In most cases, these costs are prohibitive.

We may not be able to travel. We may simply not be able to face the stress of travelling and returning home without a bump or a baby. The emotional toll of travelling cannot be underestimated. Grief has many more facets than sadness. Anxiety, exhaustion, panic attacks and deep mistrust are all symptoms of complicated grief, which can make travelling through airports to foreign cities and in taxis and buses to a strange hospital impossible and much more traumatic than it may appear to an outsider. This was the greatest barrier for me, alongside the unbearable thought of leaving my two children in Ireland and then leaving their dead sister in England.

The stigma associated with travel is enormous. Many fear there will be gossip and judgment and their family, friends or community will exclude or talk about them. This, along with the grief, is more than we can cope with. These are just some of the limitless number of reasons that travelling to end a pregnancy is not an option for everyone, even when we know a termination is the right thing for us, our baby and our family.

What happens to us in circumstance where we will not have a baby is that we are unable to travel and become trapped. We are in a nightmare scenario where we appear to be expecting a baby but are preparing for a massive loss. We are asked questions about our growing bump and people expect us to be happy about it. This is more than a woman can cope with. To avoid this, we isolate ourselves and hide. We go inside, lock the door and do not go out again. We suffer anxiety and nightmares and experience the ever-present knowledge that we are losing a baby alone. While we wait, we cannot lead normal lives and go to work, we struggle to take care of other children and all our relationships suffer massively. According to the eighth amendment, none of this matters because being alive is enough. It is not enough and it was not enough for me.

Pregnancy can affect our physical and mental health, even in previously healthy pregnancies where there are no foetal complications. However, when something goes wrong, whether it is a miscarriage, the woman's waters break or a foetal anomaly is detected, the risks to one's physical and mental health increase. Why is it that only our lives matter while we are pregnant? Why is it okay to completely ignore our physical and mental well-being? Does our well-being not matter when we are pregnant? Is it simply set aside and is it okay to be just alive? Whatever else we do with our laws, we need to ensure the normal duty of care to us, as living, breathing, functional members of society and as women and individuals, is never set aside.

When considering proposed changes to our laws, it is important that the committee also consider how women in Ireland will be protected and assured of access to information and services and have their safety and privacy protected. If abortion is legalised, it should be incorporated into current maternity care. Do not leave us out or continue to stigmatise and isolate us. It is important that lawful services are available to all pregnant women in Ireland, irrespective of where they live, how much they earn or how much money they have. This means that every maternity hospital, irrespective of its ethos, must be in a position to provide these services at all times. Health care should never be a black market product and no woman should ever be afraid to seek medical assistance for fear of arrest.

We respect and fully understand that some medical practitioners may object to carrying out abortions of any type on the basis of their own sincere beliefs. That is grand but we do not accept that this should ever be allowed to prevent a person from accessing the medical care he or she needs. The responsibility must be on every medical facility, regardless of ownership or ethos, to ensure the facility can and will provide procedures that are legal in this country. Conscientious objection should not be used in a manipulative manner to avoid taking care of some patients.

We also need to ensure protests, harassment of patients and the barring of access to medical facilities are not tolerated. We have seen what has been done in other countries and it cannot be tolerated here under any circumstances. Legally enforceable safe zones around medical facilities should be part of any legislation. These will be crucial to provide privacy and safety for patients, staff and visitors.

We hope we have been able to open a window into the unnecessary suffering the eighth amendment has inflicted on us and continues to inflict on other women at a time when they are at their most vulnerable and the diagnosis they receive should be the worst thing that has ever happened to them. We have provided much more detail in our main submission and we recommend that members take time to read the personal stories made available to the committee. None of us should have to reveal these intimate details to achieve change and we are grateful to those who have trusted us to submit their stories to the committee.

We hope we have been able to shine a light on how unworkable a gestational limit would be when addressing issues of foetal or maternal health. We are sure that by listening to our lived experiences and reading about how Ireland and its current laws added to our trauma, members will be in a much better informed position to consider the mature and compassionate recommendations made to them by citizens. We can only speak to the committee of our personal experiences. We know, however, that all women make decisions in these matters based on their private, personal and valid needs. We support all choices for everyone.

The committee has an opportunity to make a recommendation to the Government which recognises that we all make decisions around pregnancy and parenting in a mature and responsible manner. We trust that, having heard the expert evidence and lived experiences presented to it, the committee's recommendations will support us all in our decisions and look after us all when we need it.

I thank Mr. Edwards and Ms Cullen-Delsol for sharing their very sad, personal and intimate stories with us. We appreciate that this is a difficult thing to do.

I thank Mr. Edwards and Ms Cullen-Delsol and echo the sentiment expressed by the Chair. I understand it is not easy for the witnesses to share their stories and it is extremely regrettable that it is necessary for them to do so. We sincerely thank them for sharing their stories with the committee. I understand the point Mr. Edwards made about people being afraid to talk to a priest about this issue. I can see exactly why it is regrettable and I imagine it is very real.

With regard to the support the group provided to the two women who took cases to the United Nations Human Rights Committee, will the witnesses talk us through that journey and the support the group provided to the women in question? Will they elaborate on the full range of prenatal tests that are required? We know, for example, that the maternity strategy was launched in January 2016 and that access to anomaly scanning is very much hit and miss. The witnesses are correct that access sometimes depends on a person's bank balance. However, it can also depend on where a person lives. We heard statements that scans are offered where clinically indicated but a screening scan will clearly not be clinically indicated.

When discussing the time involved, will the witnesses explain the screening that is available and the extent to which it needs to be enhanced in order to provide a full service? As Ms Cullen-Delsol stated, the first screening may show cause for further investigation. Given that time is often very important in these types of cases, will the witnesses talk the committee through how the process would work for people living in County Kerry or another area where people may not have access to these scans? What are the implications of this?

I understand the witnesses are eager to answer any questions members may have. It is absolutely fine, however, if there are any questions that they find too difficult or that they are not comfortable answering. I ask them to just proceed as they wish.

Mr. Gerry Edwards

In respect of the two women who took their complaints to the United Nations Human Rights Committee, Ms Amanda Mellet is one of the founding members of Termination for Medical Reasons, TFMR. Ms Siobhán Whelan was one of the women who received support from Ms Mellet, Ms Ruth Bowie and Ms Arlette Lyons quite early on in the group's history. Ms Mellet provided support to many women while she was still recovering from her own traumatic loss. Ms Mellet and Ms Whelan made the decision to take the complaints against Ireland because Ireland did not seem to be stepping up to its own responsibilities. It was really to show everybody the extent to which women are being brutalised and abused by the eighth amendment and by the lack of response from successive Governments to this issue. I am glad that we have moved on from that point and that we are here today to discuss a solution.

Questions were asked about tests. It is mainly the large Dublin hospitals that offer anomaly scans, the so-called "big scan" between 19 and 22 weeks. Some people get a dating scan earlier on just so as to make sure that sizes and dates are all right and we know, roughly, the rate at which babies are expected to continue to grow. These early scans sometimes pick up anomalies, particularly structural anomalies that are easier to spot, but sometimes what doctors refer to as "soft markers" do not show up until the 22-week scan. Soft markers do not give a clear diagnosis but indicate that there may be developmental issues. Further tests are then involved. Some tests require the taking of samples - chorionic villus sampling, CVS, tests frequently go to Scotland, for example - which means that the parents could be waiting for a further week or so to get a schedule for the test and then to get the results back. They could also be left waiting to get genetic information from an amniocentesis. There might also be a need for an MRI scan. Advanced scans might be required for heart issues, for example, which means that further specialists have to get involved to look at the extent to which the heart is developing incorrectly and whether this might be corrected by surgery in utero or shortly after birth. With some conditions, particularly where there is potential for severe impact on the baby that may not necessarily be fatal, parents need a lot more certainty before they can make a decision. It can take up to two weeks to get an MRI scan. A mother could quite easily be heading into 26, 28 or 30 weeks by this point and this is assuming that she is receiving proper care. In other parts of the country outside of Dublin, however, services can be particularly poor. This is no reflection on the doctors or medical staff involved but rather on the lack of resources. A mother might, for example, go to her GP at 30 or 32 weeks and comment that she has been feeling a reduction in the level of movement. It might be a mother's instinct that something is wrong late on in the pregnancy that eventually gets her referred for further tests.

In the context of the 22-week limit then, there was almost no discussion of severe foetal anomalies at the Citizens' Assembly. The sets of gestational limits put forward to the assembly did not apply to one particular option over another; they were put forward for all of the votes taken by the citizens. There was a lack of information there and they were not terribly well informed with regard to the process of diagnosis and getting a prognosis. Even at that, anyone who is told one's baby has a fatal or very severe condition needs time to think about it. It would be very damaging to put an arbitrary gestational limit in front of parents to the effect that unless they make their minds up before a certain point, they will be unable to avail of services in Ireland. There would be a risk that parents might make decisions more hastily than they otherwise would, possibly resulting in people opting for a termination where they might have realised that this was not perhaps the right decision for them if they had only had more time. Once that decision is made, however, it is made. I consider a 22-week limit, then, to be completely inappropriate and I hope that fatal and severe foetal anomalies would be considered together in this context and recognised as the tragedies that they are. These are wanted pregnancies. Parents who get to the 20-week or 22-week scan intend to bring that baby into their family and anything that intervenes in that is unforeseen. We need to make allowance for that in our legal and health systems in Ireland, rather than trying to find ways of catching people out or of leaving people outside of the safety nets.

I should also point out that some people have negative views about scans and testing almost as though they were a means to screen out and to eliminate. I have 11-year old twin daughters at home who are alive only because of the anomaly scan. They had severe twin-to-twin transfusion syndrome diagnosed at 20 weeks and it was expected that they would both be dead within a matter of days. We were able to travel in order to have life-saving surgery for them which is now available here - we had to travel at the time because of resources rather than because of the law. My daughters are here because we were able to have scans.

While I acknowledge it is the intention of the national maternity strategy to provide these services to women throughout the country, it is not happening quickly enough People may be losing babies as a result of not being able to find out about conditions that could require intervention or necessitate mothers to give birth with the suitably skilled doctors in attendance.

I hope I have answered the questions fully.

I thank the witnesses for sharing their experiences. Unfortunately people often need to hear real people talking about real experiences to get a full understanding of what exactly is involved. I have a question for Ms Cullen-Delsol. I know she did not travel. What would it have meant to her to have had different care pathways available to her here? What difference would that have made?

Ms Claire Cullen-Delsol

I get asked that a lot because my daughter Alex died in the womb at 26 weeks, only five weeks after her diagnosis. Those were the longest five weeks of my life. She was born in the maternity wing of University Hospital Waterford and then I got to bring her home for a night and to have a funeral service. Her family, that is, my parents and my brother got to meet her and my kids got to meet their sister. It probably sounds like it would not have made a difference had I travelled but I refer to those five weeks We were standing in the kitchen the day we got the phone call with the diagnosis. We had decided that we were going to paint the kitchen for the new baby so myself and my husband were standing in the kitchen painting when the phone rang. We answered and the fabulous midwife from Holles Street hospital told us the she was very sorry but that she had bad news and that our baby was going to die. I cannot describe that moment. The world just fell apart and it has never come back together properly since then, though I am getting there.

I realised at that point that I was going to have to continue the pregnancy. I could not face the thought of leaving my kids and I did not have the money to travel; I would have had to borrow it. I just could not do it. My little fellow was only 18 months old at the time and he had never spent a night away from me. As the pregnancy progressed, however, I could feel her getting weaker. I could feel the movements changing from kicks to movements to flutters that grew further and further apart.

I was timing them and how long it had been since I felt a movement - six hours, ten hours, 14 hours. For two nights I sat up in bed convinced that she had died and I went through all the emotions. My child had died. In my head, she was gone. I had the grief, the mourning and all those feelings, and then I felt a tiny flutter ten hours later and again 14 hours later. In essence, I mourned her death twice before I actually experienced it.

In that time, I could not go out. I could not face the school run, for example, with the other mams at the gates saying, "When are you due? You will have a busy Christmas this year. Are you mad? They are so close together", and all the other excited questions. If somebody said that to me, I would just stand and bawl in front of them. The children would get distressed and I just did not know what to do. I was trying to get out and go to the supermarket. A woman would walk past with her baby and I would literally abandon the trolley and just leave, walk out the door. I could not face it. I could not participate in any part of my normal life. I called in sick to work and I never went back to that job again. I could not even drive up the road there because the other two women on my team who were pregnant were due around the same time as me. I still have never seen them in person again.

This was looming ahead of me - I knew I was going to have a stillbirth. I knew she was dying. I was 24 weeks pregnant and she still was not kicking. I knew there was no way she was going to survive very long. I knew she was going to die. I was going to have to give birth to a dead baby. It was ahead of me; I did not know when, but it was going to happen. The worst thing in my life was in my future but there was no way for me to prepare for it or plan for it and I had no idea when it was going to happen. The nightmares I had were horrendous. Every single night I dreamed about what that birth was going to be like. The fear, the pain, what was going to get me through labour knowing that I would not have a baby at the end of it? What gets us through labour? The thought that it will all be worth it in the end. That is it. That is what the midwives say to us. Nobody was going to be able to say that to me. There was going to be no cry. I was not going to have a baby to bring home. I was not going to be able to feed her. She was never going to have baths. I was never going to change her nappy. That was all ahead of me and I could not bear the thought that it was going to happen and I was not able to do anything about it. I was not going to be able to be her mam.

During that time it just felt like I did not matter. It felt like I did not count. All the things that I hold dear, all the things that are important to me in my life, like minding my kids and being a good mam, having a good relationship with my husband, being a good friend, a good daughter, being an all right sister - those things are important to me. My job was important to me. When I could not perform any of those functions, it did not matter. There was a thing that could have been done to help me. There was something. I was not asking for a procedure to be invented. I was asking for something that takes place all around the world, that people recognise as real medical care. I was denied it. I was told I did not deserve it, that I was not good enough for it. The fact that I had to drop out of society, that I could not function, that I was not able to be me any more did not matter just as long as I was alive. From that experience, I ended up with post-traumatic stress disorder. I have been on medication ever since. I take a tablet every day to stop myself going off the deep end. Had I been given control and had somebody said, "actually, it does matter that you feel like this. It matters enough for us to do something about it", it would have made all the difference.

I thank Ms Cullen-Delsol for sharing that with us. The written submission from Termination for Medical Reasons Ireland included two testimonies, by Aoife and Sarah. Sometimes other medical issues arise, such as sepsis, which was a very big risk to Aoife, or, for Sarah, issues relating to continuing care that had to happen in a psychiatric hospital which, she says, was not to do with the termination but how she was treated. Might Mr. Edwards expand on those a little bit?

Mr. Gerry Edwards

Aoife, not terribly dissimilarly to Savita actually, got ill during the pregnancy. It was quite apparent to all the doctors that her pregnancy was not going to carry to term, that her baby was not going to survive. Aoife got sick and developed infection. She needed to be in hospital. She was given three choices. She was told that the baby's heart could stop and they could induce labour, much like Claire was told; that she could get sick enough for them to intervene in the pregnancy; or that she could go to England. It is terrifying for a woman to be told to hang on in there until she gets sick enough for them to intervene. We know now that she might get sick enough for intervention but might become too sick to be saved. The only reason we have not had another Savita in five years is that, because of Savita, people know about the risks and they travel. The thirteenth amendment is what saves women's lives, not the eighth.

I thank Mr. Edwards. I do not wish to curtail what he is saying but a lot of members want to ask questions.

I thank both witnesses for coming in to speak to us today. For me, the focus of this committee is on the dignity of women. We are also focusing on unborn life or the unborn children. Do both witnesses think that the eighth amendment afforded them and their unborn children, now their children who have passed, any dignity?

There is a thing when someone is expecting a child - maybe I am wrong on this - that once it gets to 12 weeks, there is a feeling that it is all grand. Obviously we all know now that is not the case. However, we think that what happened to the witnesses will not happen to ourselves, that those things happen to other people. I do not think there is any greater pain, although I know it is hard to quantify pain. We heard earlier from a psychiatrist about the hormones in the brain affecting the body and all that, which explained a lot to me, but it is a complicated grief, as has been said. There really is a sense of abandonment and almost a guilt - as though somehow the woman is nearly to blame for the situation because she is the carrier of the child.

As the man in the situation, I would like to ask how Mr. Edwards felt. My own story is documented. My husband was probably more affected than I was at the time. How did Mr. Edwards feel in that moment when decisions had to be made? How did he feel about a vulnerable pregnant woman who, I suppose, he would have liked to take care of and mind?

Mr. Gerry Edwards

I will take the last question first and then come back to the issue of dignity. I felt useless when we got the diagnosis. We went in for the scan together and we were looking at crèches near work. I was thinking that if we went for this particular crèche, I would be able to pop up during my lunch breaks. I would be "Super Dad" and it would all be wonderful. For both of us, everything stopped. My wife, Gaye, was the one who was pregnant. She was the one who could feel Joshua moving inside her. She was the one going through all that physical thing. As dads, we are sort of bystanders. I think I felt I did not have a function. There was not a job that I could do to fix anything. I could not make anything better. I got to make all the phone calls. I got to do things like pick out the Golden Pages and try to find phone numbers in London and explain to strangers what was happening.

Since we were at 20 weeks, we could go to a hospital - we did not know any hospitals in England. I was trying to support Gaye as best I could. I could not, and did not, deal with any grief at the time because I had things to do. I had to be the person who did practical things - make appointments, drive, all of that stuff. At the end, I had to take Gaye away from her baby, our baby. He was delivered in Belfast and we did not know that one could bring a baby home. I thought I would have to smuggle my dead son back to try to have a funeral. I had visions of climbing over a cemetery wall with a shovel. I knew that I could not do that so we had to leave him behind for cremation and I had to take Gaye away from him. I did not feel like a good husband or father at that time. That stuck with me for a long time afterwards.

On dignity, me, my wife and our son were treated with the utmost dignity abroad; we felt we were treated like outcasts here. We did not get to attend our son's cremation. We did not know when it was; we just got a courier package at our door within a couple of weeks of his death. We signed for him like one would any Amazon delivery. The thought that our son was cremated alone troubled us for a long time. It really haunted us that we were not there. Years later, I learned that the pathologist from the hospital travels to the crematorium with the babies that are left in her care. She takes them in her car and she sits with them while they are cremated so they are not alone. I learned that about ten years after he died and we cried again then because we saw that there were people who did not know us from a bar of soap and cared about us and our baby enough to do that in a completely unsung way. It just made us more angry at how we had felt abandoned by Ireland at the time.

Every couple's experience is unique. It is clear from the many stories we hear that the outcomes are different and there are many different permutations. I hope that next year the law is changed in order to provide dignified access to medical care in Ireland.

The witnesses spoke of people who receive a diagnosis of complications, of fatal foetal abnormalities, a complex blend of things, and of term limits and testing. What they said about things taking time was correct. No one will make the decision easy. There will always be a second or third opinion and that brings us back to matters of education and access to information; the wealthier one is and the more educated one is, the more access one has to all this.

What would the witnesses like to see happen? Would they like to see people in their situation supported to whatever stage in the pregnancy they continue? Can the witnesses spell out what, ideally, they would hope to see which would alleviate the grief to some extent? I believe the witnesses do worthwhile work but what would be the achievement that they would like to see that would be of massive significance in Ireland?

Ms Claire Cullen-Delsol

The Deputy's observation that no couple is the same is really important. Nor is any pregnancy the same. We work with many women who receive the same diagnosis twice, for example. In their first, they might do what I did and carry the baby to term and on the second they might say that they absolutely cannot do it again. There are many permutations of that. It depends on the children one might have at home, for example, and one's other responsibilities. One might be looking after elderly parents, or one might have no money. We cannot go through all the variables. No one law will cover every permutation of people's lives because life is messy. Life is hard at times and there is no quota on tragedy or the amount that life can throw at one and what one has to deal with.

What I would like is to never again have to answer the phone to a woman who has questions such as how long her baby will stay warm for or if can get finger prints. Can she take pictures? Can she show them to people? How will they react? I would love for someone who is qualified, someone who has more than just the experience of having gone through this, to answer those questions for every woman who has them. I want to see everyone's needs met. That might be utopian but pregnancies are tough. Even healthy pregnancies are incredibly hard. I did not see the earlier session, but the committee will have heard how prenatal mental health care does not exist here. There are no services. One does not get looked after, particularly for pregnancies after one has had a loss. It could be a healthy pregnancy but it could be the hardest, and there is nothing there to support women through those journeys. I want to see a respectful, dignified procedure where women are listened to, their needs - whatever they may be - are met, where the external family, including the partner, is looked after, the children can talk about what is happening and where a woman can come to a decision that actually meets her needs. People ask me if I would have a termination if I received the same diagnosis again. I do not know; I cannot answer that question now. What I would like is the choice, which is all we can ask for. Give people the choice.

I thank both of the witnesses for their brave and powerful words this evening. In their submission, they said that they were forced to endure unnecessary suffering. Ms Cullen-Delsol may have answered part of my question already, which relates to State supports during the pregnancy, whether leading up to the termination or in the case that the woman proceeds with the pregnancy, and then afterwards. Other than termination being offered in Ireland, from their own experiences and those of others, can the witnesses identify specific State supports that should be in place prior to termination or birth and afterwards?

Ms Claire Cullen-Delsol

Currently there is nothing. Most of our counselling came from charities or support groups such as our own, Termination for Medical Reasons Ireland. My daughter has never had counselling although we have requested it several times. My husband only had counselling this year through work. Much of it is just maternal mental health care, because there is nothing that can be done physically, especially while one is still pregnant, but one could be supported, listened to and have the opportunity to talk about the situation. At the moment there is nothing there. Even in terms of practical support, there is nobody to explain how to fill up a stillbirth certificate or at what stage. One has to Google it. If it was not for my GP, I would have had no one to talk to outside my family. She used to call me and tell me to come up for an appointment and made sure that I came up every week to talk to her. I would sit there and rant and cry and she would listen. That was it and because maternal antenatal care with the GP is free, I could do that for free.

My midwife in the hospital only saw me once. She took me through what a still birth would be like, how I would know when Alex had died, what the signs were and what to do afterwards. That was in a maternity setting, in a maternity hospital. When I went in after my doctor could not find a heartbeat, I went to the clinic to have a scan and sat in a room with 30 other pregnant women who were all expecting babies, and I knew my baby was dead. My son was asleep beside me in his push chair and my husband was beside me, with people coming in and out, asking all the normal questions. That was just unbearable. There was no need for that. We need to be able to afford people privacy and dignity and respect and be understanding of their circumstances. Imagine sitting there, knowing one's child has died and facing a still birth, having to sit in a waiting room with 30 pregnant women and their excited families. They were swapping scan photographs in front of me.

Maternal mental health care is very important. It is essential for the well-being of all of society because the mams are making the people for the country. We need to keep them well and mind them, and that means minding their mental health because, God knows, being pregnant and having kids can be trying on mental health. That is probably step one and then after that choices and availability.

The little touches that make it bearable, such as the little things that one gets in the hospital like the clothes for the baby, the photographer who comes and takes pictures, the memory box, candles and blankets, are all provided by a charity, Féileacáin. They are not provided by the hospital. To my knowledge, the only thing the State actually provides is the coffin and that might be quite telling regarding the State's position on providing support and services.

I thank both witnesses for contributing. It would be difficult for anybody to listen to what they had to say. Nobody, including myself, would have even considered some of the details and how harrowing it must have been, particularly for somebody who wants to go through with the abortion but cannot for practical reasons. That is not widely known in Ireland. Awareness about fatal foetal abnormality and foetal abnormality, which is as serious, has increased over the past number of years with people such as them speaking out in the national media.

How did they feel when two Bills were voted down that might have allowed for fatal foetal abnormality to be dealt with even within the confines of the eighth amendment? We have been told that it is necessary to repeal or at least amend the amendment to provide for this vital health issue. The presentation refers to the time limit proposed by the Citizens' Assembly. We are here to deal with the assembly's report. It was hugely sympathetic to the view that there must be change on this issue and it overwhelmingly voted in favour. Would it be fair to say the assembly did not have sufficient time to hear evidence about the difficulties of imposing a 22-week limit? Termination for Medical Reasons Ireland did not get an opportunity to testify, which is one of the reasons we were anxious to bring the group before the committee. Should there not be any time limit? Should it be indefinite? Will the witnesses elaborate on that?

Last week, I asked Peter Boylan a question about late term or post-23 week abortions that we hear a great deal about from people who are opposed to abortion in general. It tends to be the image that is presented, which must be upsetting for those who have had to go through that. He made the point that they probably accounted for 1% of abortions. The issue of a time limit, therefore, would arise rarely.

I would like them to comment on another issue but it is entirely up to them. Reference has been made during previous meetings to Canada and this notion of botched abortions and babies being left to die, which must have been upsetting for people to hear. The organisation feels strongly about this and I wonder whether the witnesses would care to comment. I gather from people who have experienced this that sometimes they have been abused on social media by people who oppose abortion. Would they like to comment on that?

Mr. Gerry Edwards

With regard to the fatal foetal anomaly Bills that were presented and defeated, we were heartbroken. We believed that there was a legal avenue available. The advice the Government received was based on the predication that life meant born alive rather than capable of sustaining life and I still believe that had that question been put to the Supreme Court, it would have viewed it sympathetically. However, that did not get anywhere and we are where we are today. Hopefully, we can move this on. It is unfortunate that many people will have suffered in the intervening period without that having been explored to its fullest when the opportunity presented.

Gestational limits just cannot be applied when it comes to both foetal and maternal health. They are completely unworkable and totally arbitrary. The Citizens' Assembly did not get to discuss severe foetal anomalies. They recognised that there could not be a time limit for fatal foetal anomaly, but there was no discussion about severe anomalies. When they were presented with the various options - not at all, up to 12 weeks, 22 weeks or without gestational limit - in respect of each of the votes they cast, questions were asked about where they came from. They came from the advisory group working with Ms Justice Laffoy; they did not come from the citizens themselves. They were, therefore, tied into voting along those lines. Our view is that there cannot be gestational limits. That will perpetuate the situation of driving people who can travel, from a health point of view, a financial point of view and a legal status point of view, out of the country. That would create a situation whereby we would be by design making women in Ireland dependent on another country for health care. If that is done, then we are not an independent country. If we are going to describe ourselves as an independent country, then we need to look after all the people in Ireland here. That is what independence is about; it is not just about the bits one likes.

The comments on late term abortions have been made for some time and not just during the current committee debates. Comments about botched abortions, whether they are in Canada, Australia and England, and babies being born alive and left to die alone by parents and doctors in corners of hospital rooms, as though they have to move equipment out of the corner to put the baby in to die, are absolutely outrageous. I cannot understand the humanity behind coming up with that type of a grotesque scenario. We were aware that late term abortions generally happen because of foetal or maternal health. If the mother's health is in danger, the doctors will do everything they can to save the baby without compromising the mother, otherwise we are talking about situations where it is because of foetal health. There is always the possibility that a baby may be born alive and there is a medical procedure the mother can take, which will stop the baby's heart. That is to prevent distress to the baby if he or she is alive when delivered. Some women choose that and people in the anti-abortion campaign criticise those women for making that difficult decision while other women choose not to do this. That can result in a live birth but that is not a botched abortion. An expected outcome from a premature induced labour is that the baby may die and women choose that because they may wish to have the opportunity to meet their baby. It gives them great comfort to do so and those babies, like any other baby, are given all the comfort and care they require to help them to pass away peacefully. They may do that in their mother's arms. It is quite repugnant for anybody to try to portray bereaved parents and the doctors who care for them in that particular manner.

We fully understand that people will have different views about abortion services. That is perfectly natural, but it is important, both here and in the national debate, that we stick to facts and honesty and keep the grotesquery away from this kind of debate. It is too serious. I will leave it at that, if that is okay.

I thank Mr. Edwards and Ms Cullen-Delsol for their presentation. Quite honestly, I found it difficult to listen to what they have just told the committee. I cannot imagine how difficult it is to have gone through that and then to have to recount the trauma that they and their families went through for the purposes of effecting change, but I thank them for doing so.

I do not have many questions because I do not disagree. The purpose of the committee is to hear evidence and to test that evidence at times or provide an alternative view, but I do not disagree with anything that they have said. What they said makes perfect sense. What does not make sense is that we do not have services for those situations today. It is remarkable. Only for the services provided in another jurisdiction close by we probably would have dealt with this issue a long time ago.

I would be interested to know what the next steps were immediately after they got the diagnosis. Ms Cullen-Delsol mentioned she got a phone call and I am not sure whether the Edwards family were told in person or over the phone. What did their doctors do because, obviously, they are quite constrained in what they can say and what help they can offer? What happened, maybe that day or the day after, subsequent to them getting the diagnosis?

Ms Claire Cullen-Delsol

I live in Waterford and I had to travel to Dublin to have an amniocentesis and a scan done. The amniocentesis was done in Holles Street after a scan. They send the sample to the UK and then the results are faxed back. My results were delayed. I was supposed to get them on a Friday and I had wait the weekend and get them on Monday because the fax machine in the laboratory in Scotland broke. Rather than, I think the term was "dragging us up and down to Dublin", they said they would give us a call. The fabulous midwife in Holles Street rang and gave us the news. Then she said she would leave it for a few minutes and give us a call back and see what we would do. When she called back, she asked whether we would like to come in to speak to them again, and I said I wanted to go back and to know what was going on.

We drove back up to Holles Street the next morning - we found childcare for the children and headed back up - and we had approximately 20 minutes or half an hour with the foetal medicine specialist there. He was very kind. Mostly, he was just very honest. "Your baby is going to die," he repeated. He did not give us any false hope. When I asked what do I do, however, he started saying that some people find work is a nice distraction and I might go back to work. I was saying I could not go back to work. I was massive. I had a huge bump. Later I found out that was because Alex did not have a mouth or stomach and she was not swallowing the amniotic fluid. So my bump grew and grew and grew. I could not face that.

Then they said that they were not going to keep dragging me up and down, there was nothing they could do for me there and they would relay me back to my team in Waterford. I had been with the Domino midwives, who look after the woman, but with a light touch with very little intervention. When I got back, I rang them and asked what I should do, and they said they could not look after me because it was no longer a simple, low-risk pregnancy. They said they would refer me on to somebody else.

At that point, the doctors in Dublin were supposed to be referring me back to a doctor in Waterford and the Domino team was also supposed to be referring me on, and it seemed I just kind of got lost. I did not get an appointment, a phone call or anything. I was just left. So I went to my GP and asked what I should do. At this point, there were three people I had asked what I should do. Eventually, I got an appointment with the consultant in Waterford and he saw me. I had a funny turn when I went into that waiting room again, with lots of pregnant women, but, luckily, another amazing midwife came tearing out and dragged me into the corridor stating that she did not want me to have to sit out there and she had been waiting for me all day. Then I had another scan and was asked to come back in five weeks. That is what happens. A person goes in, she is scanned, they check her blood pressure and they send her home.

Mr. Gerry Edwards

We were told pretty much nothing. Our son had anencephaly so that most of his skull and brain were absent. There was no need for further tests. The scan was as conclusive as it needed to be. We were told that they could continue to bring us in and check for a heartbeat, but that was all that they could do in this jurisdiction and that was it. We ourselves had to pick up that the term "in this jurisdiction" was like a breadcrumb and we had to follow it ourselves. Otherwise, my wife would just have to go back into Holles Street every couple of weeks and confirm that our son was still alive inside her which, with that particular condition, would have been likely. He would continue to grow because he was being supported by the umbilical cord but, because he did not have a brain, once that separation occurred, he would die. This was at 20 weeks and the pregnancy could very easily have gone on for another 20, but it is just a case of, "Keep coming back and if your baby's dead, we will deliver you." That is what happens, I am afraid.

Ms Claire Cullen-Delsol

That is pretty much it.

I do not have any more questions. I thank Ms Cullen-Delsol and Mr. Edwards.

With every word the witnesses said and every detail they disclosed here, I have to be honest, my heart was racing in my chest. I have not experienced what they have experienced. I can only thank them for taking what is nothing but trauma and transforming it into a fight for change. I cannot express my gratitude enough to them both and to those they represent.

I have one question only. They have both mentioned severe anomaly and the lack of discussion on it. If there has been a lack of discussion in this regard, perhaps this would be the best time to discuss that at some level in terms of what they feel should have been discussed. Perhaps they support women who have had a pregnancy which involved a severe anomaly. Maybe it is not the first time because we have spoken about multiple pregnancies resulting in the same thing and everything that brings, and how relative and individual the impact of a diagnosis is on every woman and also every family. We look at everything that has to be taken into account with severe anomalies, in terms of finances, whether there will be someone to care for the child when the parents become elderly and die, what happens to the child then if he or she has a severe disability, the impact and burden on the child's siblings, and if there is another child in the household with high needs. I do not know whether that is the type of discussion that Mr. Edwards was saying was lacking at the assembly but he may want to comment on that in general or add anything that he feels would be appropriate.

Mr. Gerry Edwards

Parents and families who have been affected by a diagnosis of a severe anomaly have been generally quite under-represented so far. Many of them are quite understandably anxious about speaking out as publicly as we are. They have seen how some of us have been treated publicly and they are naturally concerned that they will be vilified. Some have said they would be stoned if they spoke because they feel that is how much society would judge them for the decisions that they make.

It is really important when we look at this that we put the pregnant woman in the centre. There is a woman, a real person, there who was trying to have a baby and was trying to bring another member into her family, whether it was a first or a subsequent, and she got this news. A lot needs to work right for us all to be born, and sometimes nature is cruel and things just do not work out or develop that way.

The consultants have spoken about the high proportion of miscarriages that are attributable to foetal anomaly. Obviously, there are other contributing factors there. Sometimes we do not miscarry. Sometimes it carries on but the baby is severely compromised.

Women have spoken to me about the rest of their family. They have spoken to me about their other children. Sometimes they have other children who have severe conditions, which are taking up all of their time and energy and for which they are reliant on charity. They are carers 24 hours a day, 365 days a year. They are trying to have a normal family existence with their other children.

They know how difficult life is for themselves, their families and for other children. They find that in trying to have more children, they sometimes have to face this again. There is not a one-size-fits-all solution. We all have our own family units and challenges in life. It is no easy task to try to cope in these circumstances. A woman is going to make a decision based on her immediate family and other environmental factors, such as whether she has family support, enough money, how she is coping with her life, if she has underlying physical or mental health conditions, her age, and whether the baby she is expecting is going to have serious quality of life issues that will not, however, necessarily shorten his or her life. The woman has the question of what happens when she can no longer care for this dependent child as an adult. Will she have to ask her other children to do that? Will she have to depend on the State to do that? That woman will have to look at and ask those questions. The Constitution is not a factor there. Women are not saying that the law says that they have to continue with pregnancies and therefore must. The law, as it stands, just interferes with women accessing the care that they may choose to take, which is in the best interests of them, their family and the baby. It is their parenting decision to make.

If the committee wants to create a situation in which more women will choose to continue with their pregnancies, then it needs to provide a better environment for them to do that. There need to be better social supports, carers need to be better treated and there need to be better facilities for people with additional needs. If money and skilled people are no object and there is a utopia, there will still be people who choose to terminate a pregnancy and the Oireachtas will still have a responsibility to support them in that decision. We certainly should not need to try to bring other families out into the open to explain their personal circumstances for the committee to imagine that scenario. Anyone who has been pregnant or who has contemplated having a family knows that, going through pregnancy, anything can go wrong. We are all afraid of getting bad results and I think most of us can understand that people sometimes have to make very difficult decisions and need to be supported in that. I think it is a wider societal issue, and just saying what the law is and that there is a medical service that we are not prepared to provide benevolently is not a solution for the issue nor is it against it. The issue is wider than that.

I thank Mr. Edwards and Ms Cullen-Delsol for their very emotional testimony. Most of the questions I would have asked have already been asked and answered in detail. I ask this question to get inside the minds of people who have alternative views. What type of abuse have the witnesses or other members of their organisation received? Is it coming from very extreme cranks or is it seeping into the middle consciousness of Ireland? Mr. Edwards mentioned that there should be no gestational limit on fatal foetal abnormality, to meet people's needs, and there are clearly people who would have huge difficulties with that. At the same time, the gestational limit is often debated. We had that in the Protection of Life During Pregnancy Act debate four years ago. Is there resistance to this issue? What have the witnesses gone through and have other members of their organisation been put through that? Is there resistance even within the medical profession, or do they find the medical professions in general very supportive and open to what the witnesses claim is required in making sure that they can access what is fair and reasonable for what they will have to endure or others will have to endure when they get that tragic diagnosis?

Ms Claire Cullen-Delsol

I will take the question of abuse first. I think Deputy Coppinger mentioned it too. Before I spoke to anybody about what I had gone through, I was absolutely terrified and convinced that there was something wrong with me since I wanted to end a pregnancy. There must have been something wrong since, if I could not do it, how could it be considered right? I was convinced that there must be a reason we did not provide it. By the time that I came to the understanding that there was nothing wrong with me and it was a reasonable thing, I was still terrified because I thought everybody else would think there was something wrong with me. I started to speak to people about it, including family, friends and wider circles. I then spoke to an amazing journalist who interviewed me and took the story. It snowballed from there. The vast majority of the thousands of messages that I have received publicly and privately or from people coming to me on the street have been nothing but supportive, kind and understanding. I cannot overstate that and the resonance that people have when they hear the story. They all have their own stories about sisters, friends and mothers. It has touched every family from what I can see.

There have been some voices, mostly on the fringe, who would disagree vehemently with what I believe. I am pro-choice and they are not, and they have no problem expressing that, sometimes in really vile ways. They are keyboard warriors for the most part and it is all online. I attended a pro-choice march and put a video online of what I believed were grotesque images that counter-protesters decided to bring. This happened in Ballybricken in Waterford. It is not a bustling metropolis-----

Ballybricken or Waterford?

Ms Claire Cullen-Delsol

I will not have anything said about Waterford. It was just a video that I put up because I thought that people needed to see what we are faced with. I lost a baby and none of these images will ever be worse than looking at one's own dead child. At the same time, it is not on. It is awful. There are kids present. I have my own kids. It is normally one of those things where people get together, there are many mothers, all chatting, we go for a little walk, we chant a bit, and then we all go for coffee and cake. I took a video of this horrible counter-protest, having been set up with all these rotten images, and put it online. Thousands of people saw it and commented. Maybe five of the 30,000 or so people who watched that video had something very nasty to say. It is all along the same lines. Much of it has a religious basis, and when that does not sink in, they target people personally. They will say that I am a terrible mother and did not love my baby enough, that if I had enough faith in God, I would not have lost my baby, that if I had loved the baby enough, she would still be here, and that I am using my own dead baby to allow for the deaths of other babies. They call me a murderer and a witch etc. It is a very small number of people. The impact of it at the time varies depending on my own emotional well-being. Sometimes it floors me and sometimes it does not.

In general, the response is amazing. People are fabulous and inherently good. I know we tend to legislate assuming the worst of people but I do not believe that. I think people are genuinely good and that if we give people the opportunity to show their true colours, people are generally fantastic. The support, kindness, care, love and compassion we are capable of is outstanding. It comes from all sides and sectors of society and from all ages. It is fantastic and has got me through some of my worst times. A perfect stranger, someone who used to work with my husband, came up to me when I was queueing for a coffee and said that I was amazing, to keep doing what I was doing and that they were sorry for my loss.

I did not encounter resistance in the medical community. I found it to be incredibly supportive. When I said that I was considering travelling, many people in it said not to consider it yet but to wait and see what happened. They said to wait and see what services I would get and how I got on. I think much of that was more to protect me. As time went on and my condition was deteriorating mentally and emotionally, many said to me that if they could do something for me, they would and that they were sorry I had go through that and that it was not fair. That was the general response that I got.

It goes back to people being generally compassionate. They understand it and they get it. They see it every day and they know. I cannot speak highly enough about the people who took care of me when I was pregnant.

The woman who did my first scan insisted on doing the last one also. She was there. That was one of the reasons I was waiting so long in a room with a pregnant woman. The same woman wanted to be the one to do the scan. She wanted to look after me, and she did. She took loads of pictures for me. She let me be the one to say there is no heartbeat because she knew I needed to take back some of the control at that point. While I was in labour, which took two days, she came in to see me to make sure that I was getting enough pain medication and make sure I was being looked after. The antenatal midwife did the same thing. Both of them popped in and out, with their coats on or with their lunch boxes, when they could. If they could get the time they would come in to see me. When my consultant realised that after 36 hours I still had not given birth, and that after three doses of Misoprostol or whatever it was called, I still was not in active labour but that I was just in pain and waiting, he left the conference he was at in Dublin and drove back down to Waterford. He walked into the room and he said it was Friday afternoon and that if I did not give birth by that evening, I would have to go home for the weekend and come back on Monday. He asked me what I wanted to do. I said I could take the pain and to double the dose and he did. A couple of hours later, Alex was here. It meant I did not have to go home and wait another weekend carrying a dead baby. I cannot speak highly enough of them. Once we give our medical teams the tools and the freedom to take care of people properly, we can trust them to do so.

I suppose all I can say is that this is extraordinarily difficult for both of the witnesses and for others who are in the same situation. It is also extremely powerful in terms of explaining to people what is involved. Like others, I thank the witnesses for this. Most of the questions have been around the experience of the baby dying. I was particularly moved by the cruelty of what happens after the baby dies, and having to bring the baby home in the case of people who went to England or Northern Ireland, and having to put the baby in the boot of the car crossing the ocean, or on the carousel in the airport, or having the ashes of the baby with a courier. For any of us who lose somebody we love, having a funeral, whether it is cremation or burial or religious or otherwise, is an important right, and it must be particularly important in coming to terms with, and dealing with, the whole traumatic experience. Will the witnesses expand a little on this experience and, in particular, on the fear of people actually saying they have had a termination but need a funeral?

Mr. Gerry Edwards

I will take this question. We delivered our son in Belfast, which was just a car journey up the road, and we were afraid to bring him home. We did not know how to bring a dead baby across the Border and what do we do when we get home. Nobody could tell us what to do. Nobody could counsel us on that. Neither my wife nor I ever got counselling of any description. As I explained earlier, he was cremated without us being there and we got his ashes from a courier. We still have them at home. I did not realise it at the time, but I certainly came to realise over the passing years, that the lack of a funeral had affected me greatly. It caused me an awful lot of hurt. I was on antidepressants for ten years and I did not really know why until I went and got better help myself. One day, we were expecting and we had the dreams and then we had nothing. We had no place to go. We had no grave. All of our friends knew we were expecting a baby and then there was nothing. There was no closure. My parents never met their grandson. My sisters and Gaye's father never met him. Gaye's mother travelled with us. She is the only other person who saw him and met him. If we had been able to deliver him here, all of our families could have got to see him. It would have made him more real for all of us, and not just this spot of bother we had or something. He is still our son. The whole ability to have a funeral, and have that social right, is really important. This is why more and more people are going to the extremes they are going to try to ensure that they can bring their baby home, because they need that closure.

I mentioned earlier about people being anxious about approaching their priests. Unfortunately, having a severe or fatal foetal abnormality is quite indiscriminate and does not recognise whether someone is religious or not or has money or not, or anything like that. A number of people we have supported have told us about going to their priests and the nuns in their parishes, and every one of them has said they were treated wonderfully. It is important to point this out because sometimes this is played out as being something that it is not, in terms of being religious or non-religious. For those who have religion and for whom having a religious right is important, our experience anecdotally has been the priests and nuns in the parish and community, the ones who will sit at someone's kitchen table having a cup of tea while someone is crying, understand it and they get it. They approach it from a ministry of love, compassion and healing. Some of the hierarchy have a bit more of a judgment and condemnation thing going on, and this is unfortunate because it scares people away from approaching their local clergy because they have that fear. I do not think this helps anybody. Life is tragic enough. Sometimes people need psychological help and sometimes they need spiritual help. Those doors should be open to them. Having proper closure and not being treated as an outcast is crucial for their well-being.

We need to acknowledge the importance of the witnesses' words to the committee in highlighting these issues, which, to passers-by and those not directly affected, are not issues at all but which have an impact on those who are directly affected in a way the witnesses have described very adequately. We have all in our various lifetimes had similar brushes with the same experiences. It serves to remind us these things do not go away and there is a need for the kind of things the witnesses have spoken about. There is a need for concern, compassion, caring, recognition of the situation in which a parent or parents may find themselves and recognition of the extent to which isolation can affect people being left alone to fend for themselves. We have dealt with it before and it has not diminished with the passage of time. We thank the witnesses for being here.

I thank the witnesses for their presentations. There is very little left to say, apart from that I am sure I am not the only one who is struck wondering how we ended up with a system of laws so devoid of humanity. I am absolutely stunned in terms of the suffering that the witnesses, their colleagues and their partners have gone through. It is just horrific. Forgive me for asking this because it is obvious, but it is important that we put it on the record. We have a big decision to make in a few weeks' time in terms of the type of changes we will seek. I take it the witnesses are calling on us to make a straight repeal and take this thing out of the Constitution.

Ms Claire Cullen-Delsol


That is great. I will take it beyond that. The clear message the witnesses are communicating is that we need to give our medical practitioners the flexibility to give people like the witnesses, those who have this huge challenge that can come to anyone, the support and service that they need.

Mr. Gerry Edwards

I think we need to go beyond that.

It is not just a matter of supporting people like ourselves. Any woman experiencing a crisis in pregnancy, either because she is pregnant or because of how that pregnancy has developed, needs the support of her own country.

I really hope that we, collectively, do not let the witnesses and others in their situation down.

I thank Mr. Edwards and Ms Cullen-Delsol for attending. We are indebted to them for their bravery in coming here to give us their personal stories, which must be a very difficult thing to do. It has even been difficult for us to hear it. We are very grateful for their assisting us in the job that we have to do.

As there is no other business, we will now adjourn until 1.30 p.m. on 8 November. Is that agreed? Agreed.

The joint committee adjourned at 9 p.m. until 1.30 p.m. on Wednesday, 8 November 2017.