Fatal foetal diagnosis: ‘I had a choice about his life, a choice to know him’

Cliona Johnson’s first instinct, when she was told her baby would not survive outside the womb, was to “run, get away , hide”. She feared she “couldn’t possibly” get though the pregnancy.

In 2006, a scan at 22 weeks indicated her baby had anencephaly – a disorder where the skull, scalp and brain do not develop properly. It is a fatal diagnosis.

"The obstetrician told us our options were to travel to England and have a termination or continue the pregnancy. He said the hospital would support us either way," she says.

Johnson knew instinctively she would not have a termination, but took some time to be fully at peace with the pregnancy.

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She had five children at home aged between two and 11, and worried about telling them. She worried her unborn son, later named John Paul, would suffer if born. She worried about people asking her about the baby.

“It was horrendous, like the world had ended and a black hole had opened instead of the life ahead I had imagined for our child. I was so confused and heartbroken,” she says.

“But neither of the choices was going to avoid the pain of losing this child. So, where did I have choice? I had a choice about his life, a choice to know him, to not be afraid of him and to let him show me who he was. That made me feel, ‘This is really the only thing I can choose’.

“Looking back now I realise the denial and the instinct to run were the first stage of grief, and grief is a process. But I moved through the stages, from ‘I can’t possibly do this’ to ‘Right now, he is safe and okay, and I am okay’. Things realigned in me and it was like a like a new door opened, and it was the child I did have rather that the child I thought I was going to have. With that came a new sense of purpose.”

Sense of purpose

The children, she says, took their lead from her and her husband and “with us took on the same sense of purpose, to do the best for John-Paul while we had him”.

John Paul was born, spontaneously, at 36 weeks. He lived for 17 minutes.

“We got to hold him and I got to tell him I loved him, face to face. That has been an anchor in grieving him, having that memory. The family came in. We got to be together as a family. There were tears but it was beautiful. The love in the room that day, I don’t think I’ve experienced anything like it.

“His death was very peaceful . He just stopped moving, became still. The colour faded from his face and I knew. He’d gone. I hugged him tighter and it was a sense of completion for me. It was a sense of, ‘I’ve gone as far as I can go with this little boy and now it’s time to let him go.”

She believes our attitude to diagnoses of fatal foetal abnormalities has changed since John Paul’s death, and would change further if abortion was a legal option for women. She hopes for a No vote in Friday’s referendum.

“We’ve already moved into a place where we say, ‘A child like this is going to die anyway...This life is not going to be of any worth anyway so why put a mother through it?’ when that’s not true.”

Space or support

“I have huge empathy for the women who travel, but I feel they are not being given the space or support. Abortion is so centre stage now and obstetricians are telling mothers: ‘We can’t care for you here.’ That is a terrible thing to say when she is that vulnerable...Women are being robbed blind by not being given that holistic care they need to not be afraid of their baby’s life.”

She agrees choice is important, but adds: “The reason each woman’s choice matters is because she matters, her life matters. But underneath her choice is her life. When we shift culture so that we have choice at the expense of life , we have it the wrong way around.”