In an letter emailed to all members of the Oireachtas last night, Gerry Edwards, a father, has written about his experience as a parent of a child with a fatal foetal abnormality. He remembers how the joy at his wife’s pregnancy quickly turned sorrow – and how they were forced to leave the country “like fugitives fleeing the state” to bring that pregnancy to an end.

He calls on all members of the Oireachtas to listen to his story…

Dear Member of the Oireachtas,

In October 2000 my wife and I celebrated our first wedding anniversary. Within a week we found out we were expecting our first baby. Imagine our delight – we would no longer be a couple, we would be a family. We immediately told our families and there was great excitement.

At the beginning of February 2001 we went to Holles Street for our 20 week scan and were taking note of crèches on the way that would be close to where we worked. We were projecting so much, where s/he would go to school, what would s/he do for a living etc. I assume this is normal.

When we were having our scan we didn’t notice the student ultra sonographer leave the room or that the midwife had stopped talking and was concentrating on taking a variety of measurements from different angles. I do remember thinking ‘it looks a bit like E.T.’ because there was a straight line above the eyebrows – I assumed the rest of the head was being hidden by some tummy or other tissue. I didn’t understand then how ultrasound scans work. The obstetrician on duty, not our own, arrived in the room and took more measurements and eventually asked us to come with him. We were brought to a small room with soft lighting and a box of tissues on the table. It began to dawn on us that something was wrong, but nothing could have prepared us for what we were told.

Our baby had anencephaly

It was explained to us in a matter of fact manner with a coating of empathy that our baby had anencephaly (we never heard of it) and that it was a condition which was incompatible with life (we didn’t understand) and eventually that our baby had no prospect of life outside the womb – none! They were very sorry and there was nothing they could do for us in this jurisdiction. At some point we left. We knew nothing more. We contacted our employers and said something was wrong with the scans and we couldn’t make it to work that day. We then went home to our internet dial-up to see what we could find out about anencephaly ourselves, including how to spell it.

We eventually understood that our loved and very much wanted baby would never live so we contacted our parents to try to explain. I will never forget trying to tell my mother this news over the phone. Our parents called to our house immediately, but what could they do? They were just as devastated as we were, they could see our pain but couldn’t make it go away.

Every recognition of pregnancy reminded us our baby was doomed

We discussed whether or not to continue the pregnancy. It was made clear to us that none of the hospitals here could offer us a termination. My wife was saying she couldn’t go back to work, she couldn’t go to the shops, that she didn’t want to go out at all, because she was obviously pregnant and people kept coming up to her and congratulating her, touching the bump and wishing her well. How could she respond? These people were well meaning and behaving in a normal manner, but every recognition of her pregnancy only served to remind her that our baby was doomed. The psychological toll was immense.

We arrived at the conclusion that the best thing for us was to bring the pregnancy to an end and we could try again as soon as possible. We even went to see a psychiatrist and our GP just to make sure that despite our grief our thought processes were still rational. We eventually, through our own devices, managed to be seen for a second opinion in a UK hospital.

The diagnosis and prognosis were both confirmed. It was even described as severe anencephaly. I remember asking how come there were degrees of fatal, and they explained that the extent of the damage was severe – the skull was missing from above the eyebrows to the back of the ears and down to the nape of the neck, and what brain tissue had formed had been exposed to attack from the amniotic fluid. The rapid movements within the womb my wife felt were most likely reflex movements caused by the joints hitting the wall of the womb in flotation rather than being any cognitive or deliberate movements that usually occur in pregnancy.

Like fugitives fleeing the state

There was no doubt, we were not talking about disability, which at this stage we were hoping for, but were talking about fatal foetal abnormality. Having discussed our options with this hospital we confirmed it was our wish to bring the pregnancy to an end and we made an appointment for three days later.

The evening before we travelled my mother-in-law who was travelling with us came to our house and we watched an Andrea Boccelli concert on TV. ‘Con te Partiro’ (Time to Say Goodbye) will stay with us forever. We left early the next morning feeling very much like fugitives fleeing the state. We had told only our closest family and friends about what was happening because we were afraid somebody would try to get a court order preventing us from leaving.

The sense of betrayal, neglect and complete abandonment from this state is as acute today as it was over twelve years ago.

We were treated with compassion we expected at home

As with so many people whom we have met and spoken with since who have had similar experiences to our own, we were treated with all the care and compassion in the overseas hospital that we reasonably expected from our home hospital. My wife delivered our son Joshua on the 12th February by induced labour and my mother-in-law and I were both present.

His birth, like other stillbirths, was greeted by silence. There were no cries, except for mine, my wife’s and my mother-in-law’s. I didn’t look at my son because I knew of the extent of his condition and I didn’t want that to be my lasting memory of him. A young midwife took Joshua away to clean him and dress him, in clothes a family friend provided and a baby bonnet that would fit a tennis ball to hide his wounds. We never even thought of clothes.

The midwife later asked if we would like to see him. I went with her to a separate ward where she had dressed him and placed him in a small wicker Moses basket beside a soft table light. She waited outside to allow me some private time with my first child – he looked so like me! I then brought our son to meet his mother and grandmother. It was such an emotional time. The same midwife then said something which was so important for us, then and now. She said ‘No matter what anyone tells you, you’re a mammy and a daddy now”, and we were. The hospital brought dinners to the three of us and we ate together with Joshua in his basket beside us – our only family meal.

Afterwards a Catholic chaplain visited us at our request and had a naming ceremony. We couldn’t get a Christening or Last Rites because he was stillborn. We similarly couldn’t get Birth or Death Certificates because Joshua was less than 24 weeks gestation when he was born. My wife also did not qualify for maternity leave for the same reason and ultimately went back to work sooner than she was ready, although her employer was very sympathetic.

My son was cremated alone in a different country

The next day we had to return home – without Joshua. My wife’s father and my parents never saw their grandson. His extended family never got to kiss him goodbye. None of our family or friends were able to come together to recognise his existence and support us in our loss, which are all things that should have been able to happen.

Instead, Joshua was cremated alone in a different country to all of his family at a date and time we knew nothing about, and his cremated remains were delivered to us by courier in a cardboard box in a padded jiffy envelope.

Neither of us had yet returned to work when the courier arrived and I answered the door. My wife was still in bed but saw the van outside and knew what was happening. I could hear her wailing from upstairs as I signed for our ‘package’. What kind of husband was I that I couldn’t protect my wife from this pain? What kind of father was I that I couldn’t even give my dead child a proper funeral, that left him behind in a foreign country and dragged his mother away from him?

I can never forgive this country

I know that I am supposed to recognise these things as being issues which were beyond my control, that I should accept them and move on, but I cannot. I can accept only his medical condition and it’s inevitably fatal consequence as being beyond my control, or the control of any person or society generally, but all of the associated anguish caused to me, my wife and our parents among others, I can never accept. I can never forgive this little country for having placed us in that position by denying us the right to bring forward the end of this doomed pregnancy here, and allowing us to grieve normally, to publicly recognise our baby and to have a grave that we can visit.

I have never been able to publicly write this before for a number of reasons – that I was afraid of public condemnation, even of physical assault from some; but mainly because I couldn’t face recounting what happened, how I felt and how I continue to feel. In fact, I still cannot be certain that I am recognising the emotions enough because my instinct is still to bury them to, as I perceive it, protect myself.

I feel however, that I must write this because so many mothers, including my wife, have shown such courage in coming forward with their stories and experiences and bringing about a much broader public awareness and understanding of fatal foetal abnormalities and what is being experienced by so many couples on an ongoing basis in a country of this size. Also, so few fathers have shared their experiences, possibly for some of the same reasons I hadn’t previously, that this whole discussion runs the risk of being regarded as a women’s issue when in fact it is a parent’s issue.

Thousands of other parents have since faced the same heartache

Mainly though I am writing this because I am appalled that over 12 years after Joshua was born, thousands of parents have already been faced with the same difficulties, and so many more will be.

Nothing can be done to prevent babies from developing these fatal foetal conditions, but this cannot excuse why even getting information is a lottery depending on which hospital you attend, who your obstetrician is and what questions you ask. That the choice of bringing forward the end of a pregnancy that is incapable of delivering a life is only available to those who have the means to travel abroad to avail of the service privately is shameful, and at the cost of either leaving their baby behind or attempting to smuggle them back in their hand luggage or the boot of their car.

We will have to wait another 20 years to vote?

We as a country are now in the position where our Government declined to include Fatal Foetal Abnormalities in the Protection of Life During Pregnancy Bill, and will not put forward an amendment to the Bill when passed that can be independently tested. A few in Government have spoken about the need for a referendum to cater for these circumstances, a few more have expressed support for one, but not in the lifetime of this government. None are actually calling for a referendum. Is this country going to have to wait another twenty years to get the opportunity to vote, while thousands more are going to have so much unnecessary heartache and suffering added onto the grief associated with the loss of their babies.

The story of me and my son Joshua is not special. It is not a story you will have heard often but it is not unique. It is shared to a greater or lesser extent by too many people and in the absence of change will be shared by too many more going forward. Have the referendum now! The Government has probably lost all the members it would otherwise lose already. Don’t make people suffer when it is in your gift to do the right thing.

Yours sincerely,

Gerry Edwards