Isabelle de Mézerac and her husband are expecting their fifth child when, at three months into the pregnancy, doctors announce that the baby has trisomy 18, a fatal handicap. They decide to accompany Emmanuel through to the end of his life.
The diagnosis left no room for hope. The child I was carrying would be born only to die.
I found myself in a state of suffering I could not have imagined. I no longer knew where I was or what to do. I was utterly vulnerable, completely dependent on the words of others. The pain was so intense that I wanted only to escape it. The only option the doctors offered was to end the pregnancy. That suggestion only added to my anguish. The doctor did have the honesty to add: "I must warn you—most couples have tremendous difficulty recovering from a termination." The situation was so unbearable that I thought: no, perhaps there is something else I can do. I don't know what, but perhaps there is.
And gradually, another choice emerged from my heart. It came in flashes, like lightning. I asked myself: if I faced something like this with one of my other children—say, a sudden leukemia—what would I do? Without any doubt, I would walk with them to the end. I would want to use every moment we have left together to tell each other everything, to truly know one another.
I suffered deeply knowing my baby was ill. But I did not want to hasten his death. So why rush it?
These thoughts kept returning, and they led my husband and me to the decision I presented to the doctor the next day: "I want to continue the pregnancy." I didn't know if it was even possible. My husband wasn't sure either.
But yes, it was. The doctor immediately agreed to follow me through the rest of the pregnancy. His manner was deeply respectful, filled with humanity as he walked with us in our decision. This had a profound effect on me, because I was seen first and foremost as a pregnant mother. It gave me peace.
Once we made the decision together, my husband supported me fully. When he was at work, he could step away from it, lost in his day. But I couldn't escape it for a single moment. One day I asked him, "Are you suffering?"
He said, "I suffer every time I see you."
We shared the same pain with the same intensity, though it expressed itself differently in each of us. My husband suffered in a way I couldn't fully understand.
Some people reproached me: "Do you realize what suffering you've imposed on your children?"
But I didn't cause this suffering. It was imposed on us, on all of us, including our children. We didn't want it. But perhaps we could live through it differently than what is being offered today. In the same way, the doctors didn't inflict needless pain on me—it fell on them too. They would prefer to follow healthy children. For them, too, delivering this kind of diagnosis is a form of suffering.
"And you're Catholic—why do you do this?" people said. That made me angry. "No! You understand nothing. I love this child."
Serenity and sorrow
Serenity never left me, but neither did sadness. Life and death were woven together in a process that was itself a process of living—yet death had already begun to weave its thread through it. It was complicated, psychologically very heavy, and impossible to carry alone. To choose to continue a pregnancy in such circumstances is only possible if you are truly supported by those around you, by a doctor who understands you and receives you with compassion and gentleness.
I returned to my life and all its activities. That was important.
But it was a deeply particular pregnancy. I had to live it with great intensity, to make the most of the time I had been given—because it was the time of his life. It was essential to build memories with him, to experience the moments of peace or joy we would share. And there were such moments. I gave myself two small rules: live one day at a time, and don't think about what would happen at birth. The birth itself unfolded peacefully, with our children present—a moment of profound peace, shared as a family. Emmanuel lived for only an hour and twenty minutes. He fell asleep in my arms.
It is finished
You are never ready to face the death of your child. These are moments of tremendous trial. But I carried in my heart a feeling of completeness, and I must say that feeling was the only thing that consoled me. The sense of having gone all the way for him, of having given him everything as his mother, of his having given me everything in return. Emmanuel will be missed for the rest of my life. But I discovered an intensity of love I didn't know I possessed. I, too, went all the way to the depths of myself.
Spiritually, it was a great test. I stood at the foot of the cross, but also at the foot of my faith. "Will I choose to believe?"
I also heard: "Oh, but you have a little angel in heaven—how wonderful!"
No. It is not wonderful at all. It is deeply painful. And besides, he is not a little angel. He is a child.
We must not wrap these trials in false spirituality.
I love the words of Christ's compassion. I love that even he wept before Lazarus's death. I have wept greatly, and three years later I still weep. He understood my pain as a mother. His words continue to console me.
Article from Ombres et Lumière, no. 152
Translation by Valeria Spinola