John Paul Johnson’s life, though brief, was filled with immense love and significance. Living for just seventeen minutes after birth, he was surrounded by his family, who celebrated every moment of his existence, both in the womb and after his arrival. His mother, Clíona, shares the poignant story of those precious moments with John Paul and the enduring love he brought into their lives.
Precious Moments of Connection
Cliona Johnson
At our 22-week scan, we received the devastating diagnosis that our son, John Paul, had anencephaly. Having four daughters and a son already, our son was especially excited for a brother. This time, we had decided to find out the baby’s gender, something we hadn’t done before.
In the scanning room, within seconds, the midwife stopped and delivered the heartbreaking news: “The news is not good. I’m so sorry, this baby can’t survive.” The head of the scanning department explained that John Paul had anencephaly. He was alive then, but they couldn’t predict how long he would live, certainly not long after birth, if he even survived until then.
We left the hospital and found ourselves in a coffee shop, numb with shock. It was then that my husband, also named John Paul, suggested, “Would you name him John Paul?” My immediate, heartfelt response was, “Yes, absolutely!” From that moment, he was John Paul to us. Breaking the news to our other children was difficult. They cycled through sadness and then, moments later, the normalcy of wanting ice cream. This emotional fluidity was surprisingly helpful as we ourselves processed the devastating news. For me, the diagnosis was a seismic shock, and I was still reeling.
“I came to realize that even though we didn’t know how long we would have John Paul, he was a gift. We could lose him tomorrow, or we might have three months – we simply didn’t know. All that mattered was waking up each day and knowing he was there; that was a precious gift.”
I knew there would be immense pain ahead, but I think when faced with something inevitable, you instinctively put your pain aside for a time. I wanted everything to be about him, for the rest of his life, however long that might be. Every morning, I would wake up and say “Hello” to him, and every night before sleep, I’d say “Goodnight” and tell him I loved him. I told him I loved him every single day. Our family created a ritual where every evening, we’d have a family hug, gathering all the kids and my husband and me together. We’d say “God Bless” and go through each child, including John Paul, cherishing every moment we had. It was a time to celebrate his life, however short.
During that time, we held onto him tightly and deeply appreciated every moment. Because beyond the pain that was to come, we knew we were creating precious memories. No matter what happened, loss was inevitable, but so were these beautiful moments we were building.
A Peaceful Passing
John Paul was born and lived for seventeen minutes. We were able to baptize him, which was deeply important to us. My husband performed the baptism. Looking back, I should have anticipated what happened next, but when my husband cut the umbilical cord, I watched life gently slip away from his face. My love for him didn’t diminish; instead, I recognized the profound peace in his passing. It was incredibly peaceful, as if he simply drifted away.
Cliona Johnson
In the aftermath, reflecting on the preciousness of his life has been a source of comfort. Grief is an intrinsic part of life, just as much as joy and celebration. I’ve learned more about this journey over time. Each experience has been like a seed planted in my heart, and looking back, I see how these seeds have grown into a garden within me. A garden I wouldn’t trade for anything because it represents the memoir of my son, a part of who I have become because of him.
Cliona Johnson
A Tiny Life, A Huge Impact
John Paul had a profound impact on me; he changed me fundamentally. I treasure that change now – it was worth the pain. It was painful because of this tiny, imperfect son whom I loved so deeply and yearned to be with. I now hold the image that imperfection is beautiful. I used to be a perfectionist, demanding much of myself, rushing through life to achieve, living at a pace that was too fast. John Paul has helped slow me down, to truly live in each moment. He has taught me patience with myself and my own imperfections. He has made me more patient with my other children and their imperfections. He taught me that imperfection in human beings is something beautiful and valuable. I wouldn’t trade that lesson for the world. It has transformed the way I mother.
Cliona Johnson
When a mother receives a diagnosis that her baby will die, society often wants to alleviate that pain, to take it away if possible. We all wish we could erase that pain. But what I want to encourage mothers in this situation to do is to pause and consider: one way or another, I will survive, and my baby will not. That is not a choice I have. But I do have a choice in how I spend the time I have with my baby, and what role I will play in my baby’s life and death. I will be left with pain regardless. But the crucial choice is: will I be left with only pain, or with pain alongside beautiful memories and the capacity to heal?
Cliona Johnson
What I want to convey to any woman facing this situation is that it is possible to navigate this. It is agonizing, but it is also an incredibly precious time to hold onto your child.
Cliona Johnson
John Paul Johnson
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ANENCEPHALY is a neural tube defect where the baby’s skull and brain don’t develop correctly in the womb. A study in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived briefly after birth. Of those, 25% lived up to 5 days, and up to 7% lived up to 28 days.
Jacquier M, Klein A, Boltshauser E. ‘Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.’ British Journal of Obstetrics and Gynaecology 2006; 113:951–953
