ON THIS DAY sixteen years ago, my first son was born. His name was Joshua and he did not cry. I cried, my wife cried and my mother-in-law cried. I think some of the midwives in attendance cried too.

Joshua had a condition called anencephaly. It meant that his skull did not close when the neural tube was developing and because his skull was open most of his brain was missing. He could never live. Joshua was delivered by induced labour at 22 weeks’ gestation.

Although we lived in Dublin at the time, Joshua was born in Belfast, in a different country to the rest of his family. The reason for this is because it was illegal for the maternity hospitals in our independent Republic to provide a termination of pregnancy, even by induced labour. Even in circumstances where a baby did not have the capacity to either be born alive or to survive independently.

We were unable to bring Joshua home for a funeral because we didn’t know how to explain to anyone that we had a tiny dead baby. What would become of us? Bear in mind that at that time we could be prosecuted under an Act from the same time that Abraham Lincoln became president of America and sentenced to life in prison.

Instead we arranged with the hospital to have Joshua cremated in Belfast. We did not know when this would take place and we were unable to be with him. Sometime later we had what was for us our funeral – his remains were delivered to us in a padded envelope by a courier.

Gerry Edwards Gerry Edwards

Joshua's remains as sent on from the crematorium in Belfast. Gerry Edwards Gerry Edwards

The thought that our son was cremated alone in a different country troubled us greatly for many years. We found out recently that a pathologist in the hospital always takes the babies left in her charge to the crematorium in her car and sits with them during their cremation. Hearing about this individual act of kindness and respect for our son made us cry again, but with gratitude.

It reminded us that although we felt totally abandoned by Ireland when we needed her most, people are inherently good. They care and they have respect for others, their challenges and the choices they make.

Unfortunately, although my mother-in-law met Joshua because she travelled with us, my father-in-law could not. My parents never met him, my sisters never met him and my wife’s brothers never met him. Nobody else got to see him or kiss him goodbye. We were denied the opportunity to be publicly supported in our grief by our friends, colleagues and neighbours. It was as though our son never existed.

Joshua was real, he was wanted

This is why marking his anniversary is so important for us. Joshua was real, he was wanted, he was and to this day is loved and he is my son.

In the years that passed Gaye and I were lucky enough to have four beautiful children. It was a difficult journey and was not without further losses. It is a time I wouldn’t wish upon my worst enemy, but I would do it all again tomorrow to have the family I have today.

During the 2002 Referendum, which sought yet again to remove suicide as legitimate grounds for abortion, Bertie Ahern said in relation to Deirdre Conroy’s story of her termination of pregnancy following a diagnosis of a fatal foetal anomaly, that he could not legislate for individual cases. This prompted my wife to write about Joshua to point out that Deirdre’s case was not unique. But Bertie and his Government didn’t care.

Deirdre wrote her letter as Deirdre DeBarra and my wife wrote hers as Gaye Brennan. This was the impact of the shaming and intimidation of women at that time.  No-one felt safe in coming forward with their true identities.

Just over four years ago, Arlette, Amanda, Ruth and Jennifer came forward to tell their stories of being forced to travel abroad to have a termination of pregnancy following their tragic diagnoses, and they did so using their own identities and set up the group TFMR Ireland (Terminations for Medical Reasons). This was the beginning of a social change.

I felt pride – and shame

Amid a feeling of pride for these women, I also felt shame. If I had been as brave as them many years before, could they have been spared the additional suffering they had to endure? It was not until President Higgins was signing in the PLDPA 2013 that the fury finally broke through. Our Oireachtas had declined the opportunity to include a provision to deal with fatal foetal anomalies. I wrote a letter to all TDs and Senators imploring them to amend the law and to stop this cruelty, and that letter was published here in TheJournal.ie.

I fully expected an urgent response from our elected representatives – that they would feel compelled to do the right thing. However, we have moved to 2017 with two rejected Fatal Foetal Anomaly Bills and a rejected Repeal the 8th Bill.

Still women go to our maternity hospitals every day, and still several every week will receive the devastating news that, due to a cruelty of nature, their much-wanted baby will die in the womb, during birth or shortly after.

Still, this time due to the cruelty of people, those who feel they cannot continue the pregnancy in these circumstances will need to travel as we did to avail of termination of pregnancy services overseas or else be forced to continue the pregnancy against their will in Ireland, wondering every day if that will be the day their baby dies inside them.

Those who feel entitled to publicly condemn us

Although the general levels of support and respect from people in Ireland towards those women, and men, who share their personal stories has been overwhelming, it is very clear that there are those who are not satisfied simply to disagree with the choice we, and others like us, made. Instead they feel entitled to publicly condemn us for them.

These range from anonymous trolls on social media who can be extremely overt and callous in their comments, all the way through to members of the Oireachtas and clergy who try to portray us as cold and uncaring people who were just dissatisfied that our babies were not perfect. They imply that we did not value or love our babies. One even went so far as to refer to our precious babies as “debris, not the kind of thing you put into a coffin and grieve over”.

They deliberately conflate our babies’ conditions with illnesses and disabilities, most particularly with Down Syndrome. There has even been a concerted effort to prevent the use of the phrase “fatal foetal anomaly” in place of inaccurate euphemisms like “life-limiting condition” or “poor prognosis”.

I believe that all of this is a deliberate effort to deflect public discussion from the realities of the most tragic of situations that we faced. Our experience has generally been that the more some people claim to have moral superiority, the less they seem to demonstrate it.

Cruel, inhuman, degrading

In June last year the United Nations Human Rights Committee ruled that Amanda Mellet, one of those founders of TFMR, by being denied access to a lawful termination of pregnancy in Ireland, was subjected to severe emotional and mental suffering and that Ireland violated her rights to freedom from cruel, inhuman or degrading treatment, privacy and equality before the law.

Our Government’s response was not to put a Referendum on Repeal of the 8th before the people of Ireland, but instead to set up a Citizens’ Assembly to discuss the issue.

The Edwards family in front of street art by Maser, shortly before it was removed. Gerry Edwards Gerry Edwards

I have always maintained that this was a completely unnecessary step and was in fact a mechanism to abdicate, at least temporarily, their responsibility to act as our elected legislators. That said, I feel that Justice Laffoy is doing an excellent job and that the selected 99 citizens are taking their responsibilities very seriously, and I expect them to make their recommendations to the Oireachtas in May or June this year.

The question remains though, having set up the Citizens’ Assembly and given them timeframes within which to report on a number of issues, what will the Oireachtas do next? Will they prove to the sceptics that this was just a can-kicking exercise or will they show some respect to the volunteer citizens who have done what was asked of them?

It is imperative that the Oireachtas establishes a special Committee to act upon the recommendations of the Citizens’ Assembly, whatever they may be. Clear terms of reference should be set out including a maximum time frame within which the Committee should report to Government.

This can and should be done in advance of the Citizens’ Assembly report. On the basis that we know that women’s human rights are being violated on a daily basis there simply cannot be any more deferral on the part of Government. It is time for them all to grow up and accept the responsibility they sought. They need to put a Referendum to Repeal the 8th before the people of Ireland so that they can determine whether or not they wish to decriminalise abortion and extend the provision of these essential medical services to women in Ireland.

As we remember Joshua today I can’t help but wonder whether or not we as a society will stop punishing tragedy before his 17th anniversary. And if not, why not?

Gerry Edwards is chairperson of TFMR Ireland (Terminations for Medical Reasons)