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.