John Paul Johnson

John Paul - Ours for a while

John Paul Johnson lived for seventeen minutes after birth, surrounded by his family and those who loved him. He was theirs for a time; and every moment of his life in the womb and after birth was celebrated by his family. His mother, Clíona, talks about those precious moments with John Paul and the love he brought to everyone.


Precious Moments

Cliona Johnson's baby, John Paul, was diagnosed with anencephaly in the womb

We got our diagnosis that our little son John Paul had anencephaly at our 22 week scan. So I have 5 other kids 4 girls and a boy and the boy was really rooting for a brother, we decided this time we'd find out if whether it was a girl or a boy because we had never done that before.

We went into the scanning room and within rougly 20 seconds, the midwife who was scanning me, she just stopped and said 'The news is not good, I'm so sorry, this baby can't survive'. The master of the scanning department explained it to us that our baby had anencephaly and that for now, you know, he was doing well, he was alive but they had no idea how long. Certainly once he was born he would die very shortly after if not before.

So we didn't go straight home, we went off for a coffee and sat there in shock and it was then that my husband who is called John Paul said 'Would you name him John Paul?' I just said 'yeah! absolutely' from that moment he was John Paul. We had to go home and break the news, of course they were upset. They were upset one minute and the next minute they wanted an ice cream. They flipped between sorrow and normality, which was actually quite good for us as we processed the news. Because for me it was like a gong booming in my world, I was still reeling from the blow.

"I realised that although we didn't know the length of how long we'd have John Paul, he was a gift. It could be tomorrow that we'd lose him, or it could be three months – we didn't know. All we knew was that everyday I woke up and he was there, that was a gift."

Now obviously I knew that there was pain ahead and to an extent I think when you know you have to deal with something, you do put your pain on hold. I wanted it to be about him, I wanted the rest of his life to be about him. You know each day that we had him, I'd wake up in the morning and just say 'Hello' and last thing before I go to sleep at night I'd say 'Goodnight' and tell him I loved him. I told him I loved him everyday and similar with the family, the rest of the family every evening we'd have a family hug where we'd all gather around the kids and my husband and myself, 'God Bless' and we'd go down through them all including John Paul and made the most of his time, it was a time to celebrate.

That was the time where we just held on to him and appreciated him because it means that as well as the pain that is going to happen afterwards, no matter what happens we're going to have pain, there's going to be loss, but as well as that we had precious memories.


Peaceful death

He was born and lived for 17 minutes. We got to baptise him, which was something that was really important to us. My husband baptised him. In hindsight I realise now, I should have expected this but it was when my husband cut the cord that I watched the little life drain out of his face. You know, my love didn't fade in anyway, I just realised it was so peaceful, it was so peaceful, it's like he just slipped away in peace.

Cliona Johnson's baby, John Paul, was diagnosed with anencephaly in the womb


After a while, looking back and remembering something precious about his life and that really does help. Grief is so much a part of life just as much as joy and celebratation. I learned more and more about this along the way and each of these things that came to us like a little seed dropping into my heart and as I look back over time, I realise these seeds have grown up and we're like a little garden. A garden I wouldn't swap for the world because they're like the garden inside me, of my little memoir to my son, that's a part of who I've become, because of him.

Cliona Johnson's baby, John Paul, was diagnosed with anencephaly in the womb


A tiny, imperfect human has made such a huge impact to our lives

He had an impact on me, he changed me. I really treasure that now - it's worth the pain. It was painful because of this little imperfect son whom I loved so much and really yearned to be with so much, I have a picture in my mind that imperfection is beautiful. I used to be a perfectionist, I would demand a lot from myself, rushed through life achieving things, a pace of life that I think was a little bit too fast. I think what John Paul has done for our family and for me is that he has helped slow me down, to live the moments each day. He's taught me to be patient with myself, to be patient with my own imperfections. He's taught me to be more patient with my other children and the imperfections in them. He's taught me that imperfection in human beings is something beautiful to be valued. I wouldn't swap that for the world. That has changed the way I mother.

Cliona Johnson's baby, John Paul, was diagnosed with anencephaly in the womb

When a mother finds themselves in this situation with a diagnosis of their baby's going to die, it has a condition where it is going to die, what society wants to do is rally around and take that pain away as best they can, we'd all love to take that pain away. But what I would love to do is to encourage a mother who finds themselves in this scenario, is to stop and think: one way or the other the future holds me alive and my baby will die. I've no choice in that; what I have a choice about is what I do, what role I will play in the life of my baby while I have him and what role I will play in the death of my baby. I will be left behind one way or the other. But the pain of what I've just being through one way or the other is the choice. Will I be left behind with pain and some beautiful memories and the ability to heal, or will I be left behind without those beautiful memories.

Cliona Johnson's baby, John Paul, was diagnosed with anencephaly in the womb

And so what I would love to say to a woman who find herself in this situation, is that it's doable. It is awful but it's precious to be able to hold on to your child at this time.

Cliona Johnson's baby, John Paul, was diagnosed with anencephaly in the womb

John Paul Johnson


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ANENCEPHALY is a neural tube defect which means that the baby's skull and brain do not develop correctly in the womb. A recent study published in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth.

Jacquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953