Often as Deputies we have to talk about injustices, unfairnesses or cruelties that happened to other people and we have to convey their concerns, pain and desire for a remedy, but, occasionally, one has to talk about something of which one has direct personal experience and, for me, this is one of those occasions.
Next Tuesday 13 years ago I had to bury my daughter, Ella, who was born with fatal foetal abnormalities – trisomy 13. She would be 13 this spring. It was a beautiful spring day exactly like today when we had to bury her. Myself, her mother and her two brothers think about her every day. We have a tree, which a friend of ours kindly gave us at the time, planted on Killiney Hill to remind us of her and we go up there every year to remember her and think about how she might still be here. She was a daughter that we desperately wanted.
When we received the diagnosis that she had a condition that was incompatible with life we could not understand it. We could not get our heads around that idea.
We went to the ends of the earth from geneticists to doctors, got first, second and third opinions and looked at alternative medicine to see if it had some different perspective.
We looked in every possible direction to cling on to the hope that she might live but there was no doubt about it.
It was an absolute certainty that she would not live because she had a condition that was incompatible with life, and that makes this situation that we are talking about completely unique. It has nothing to do with the right to life because one cannot protect a life when we are talking about a condition that is incompatible with life – it cannot be protected.
That is the point of this Bill [see below] . That is why the Constitution does not apply; the constitutional protection to life does not apply because this is a life that cannot be saved. Setting aside all the debates and disputes about life, choice and all the rest of it, this is a life that cannot be saved, even though this is a life which the parents want desperately to be saved.
Therefore, the issue of misdiagnosis does not come into it because in these circumstances the parents will go to the ends of the earth. We do not even need the safeguard of the certification by two doctors that is in this Bill.
I can guarantee that every parent in this situation will go not only to two doctors but to three, four, five or six doctors They will explore every single possible avenue in the desperate hope that their child will survive.
It is only when it becomes clear and when they finally get their heads around the fact that there is no chance of survival that they will relinquish that hope.
Therefore, the issue of misdiagnosis does not come into it and neither does the issue of constitutional protections for life.
This is a tragedy whatever way one looks at it, and it is a tragedy that will stay with the people who are victims of it for the rest of their lives and not only for their lives but if there are brothers or sisters involved, for their lives too.
My children think about their sister all the time and desperately wish that she was there but she could not survive. She was a victim of the cruelty of nature, nothing else, something that we cannot control.
Therefore, the only questionis: are we going to, in some way, alleviate, or at least not compound, the terrible tragedy of losing a wanted child, which the parents, and the families, of babies with these conditions are going to suffer? That is the issue.
Are we going to allow hundreds of people again this year to go through this terrible tragedy and make it worse for them?
They are going to go through the tragedy anyway, they are going to feel the pain and they will feel it for the rest of their lives, but are we going to make it worse? T
hat is the issue. It is within the power of the people in this Chamber to ensure that it is not made worse.
This morning in Holles Street or in Rotunda there is a very good chance that another couple are getting this news and they will be utterly devastated. They will explore every single option in the desperate hope that the news they have been given by the doctors is not true.
When they receive that news, the least we can do is to ensure they have the right to decide how an inevitable ending of life occurs and whether they will have all of the support, comfort and backup we can give them in a situation where a tragedy is inevitable. That is the choice the Minister has.
I appeal to the Deputies next Tuesday [when voting on Clare Daly’s bill takes place] to reach across and press the green button to give some support to those who will suffer it that this terrible life-affecting tragedy will not be compounded by the actions of Deputies in this Chamber.”
Richard Boyd Barrett TD during a a debate on Clare Daly’s proposed amendment to the Protection of Life in Pregnancy (Fatal Foetal Abnormalities Bill) in the Dáil today.
