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Dublin: 6 °C Monday 17 February, 2020

Column: Nothing has changed for couples whose baby's condition is incompatible with life

I am angry at the hijackers and manipulators of language who try to tell us that our child was only ‘sick’ or ‘disabled’, who refuse to understand that fatal foetal abnormalities are just that – fatal.

Gerry Edwards Chairperson, TFMR Ireland

IT IS THIRTEEN years today since my eldest son was stillborn. His name is Joshua. I am sitting at home trying to decide how to mark his birthday/anniversary with my wife and our four young children, ranging in age from seven to eleven. Should we have a cake, and if so what type? A birthday cake just doesn’t seem appropriate because it is usually accompanied by singing ‘Happy Birthday’. Is it time for Joshua’s younger siblings to see the photos taken of him after his birth? One of my daughters previously said she couldn’t wait to be dead so she could see what he looked like.

Most families who have lost a child would go to the graveyard and say a prayer or spend some time in memory of what was, possibly contemplation of what could have been (Joshua would have been celebrating his coming of age as a bone-fide teenager), but definitely in recognition of the part that their child played and continues to play in their lives. We can’t do that because we don’t have a grave for our son.

His condition was incompatible with life

During our 20 week scan, Joshua was diagnosed with a condition called Anencephaly. We were advised that this is a FATAL foetal abnormality – that the condition is “incompatible with life”. We received this diagnosis from fully qualified and experienced medical professionals in three different hospitals. Our son’s skull was missing from the eyebrows to behind the ears and down to the nape of his neck, and the brain had suffered catastrophic damage as a result of its exposure to the amniotic fluid and from its impacts with the wall of the womb.

After much consideration, my wife and I decided that the best thing for us and for our son was to bring the pregnancy to its inevitable end sooner. Because the law in Ireland prohibits this, we were forced to travel to a UK hospital where delivery was induced (exactly as it would have been 18-20 weeks later in Ireland) and our son was born. We named him and we got to spend some time together with him as a family.

The next day we returned to Ireland but could not bring our son with us. His cremated remains were delivered by courier a short time later. We could not have a funeral where we could be supported in our grief by our extended family, our friends and our community.

Nothing has changed for parents like us

In the 13 years since then, nothing has changed for couples who receive a diagnosis that their baby has a condition which is incompatible with life. Some choose to continue with their pregnancies and they retain the support of their medical carers and, eventually, have to say goodbye to their babies too. They can have funerals and gravesides at which to pray and remember their loved ones. Others chose to end their pregnancies sooner and they continue to be abandoned in the same way that we were.

What I feel more than grief is anger. I am angry at the hijackers and manipulators of language who try to tell us and others that our babies were only sick or disabled, and liken fatal foetal abnormalities with conditions which are potentially fatal – like a hole in the heart. One of my daughters has a hole in her heart so we are more than aware of the differences. One of the people who has made this comparison is Taoiseach Enda Kenny on 10th December 20013.

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A number of parents who have been similarly affected have decided to break our anonymity and share our stories so that we can hopefully effect some legal changes – to provide support for others who have gone through and are going through similar situations. In doing so, we have exposed ourselves to some vile comments from vile people and organisations. However, we still believe that we have done the right thing.

Enda Kenny has been invited to meet with us so that he can better understand this situation and it has been suggested to him that he speak to some qualified medical professionals about the circumstances under which they make these diagnoses, but it would appear that he, and his Government, prefer to remain wilfully ignorant – as to be otherwise would compel them to do the right thing.

I hope that by the time I reach my son’s next anniversary the legal situation in Ireland will either be different or that a date for a constitutional referendum on the issue will be set. However, I cannot believe that at any time soon our own cowardly lions in Government will find any courage.

Column: My son was cremated alone, in a different country, because he had a fatal foetal abnormality

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About the author:

Gerry Edwards  / Chairperson, TFMR Ireland

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