Forced to UK for stillbirth of son
Should we have a cake, and, if so, what type? A birthday cake doesn’t seem appropriate, because it is usually accompanied by the song Happy Birthday. Is it time for Joshua’s younger siblings to see the photographs taken of him after his birth? One of my daughters said she couldn’t wait to be dead, so she could see what he looked like.
Most families who have lost a child go to the graveyard, and say a prayer or spend time in memory of what was, and possibly in contemplation of what could have been (Joshua would now be 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.
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 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 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 it’s 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 spent 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.
In the 13 years since then, nothing has changed for couples who receive a diagnosis that their baby has a condition 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 choose 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 their babies were only sick or disabled, and liken fatal foetal abnormalities with conditions that 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.
A number of parents, us included, have decided to break our anonymity and share our stories, so that we can, hopefully, effect some legal changes and 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.
Taoiseach Enda Kenny has been invited to meet with us, so that he can better understand this situation.
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.
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