Marie only lived 5 days but her parents gave her their best

A father's account of his infant child's death is rare. This case is all the more precious for the clarity, sincerity, and disconcerting humility with which it recounts all that a father is capable of offering his daughter in a condensed life that lasted just five days.

On April 11, 2022, Charles de La Verrie, a 40-year-old married father of a 3.5-year-old daughter, was confronted with the death of his second daughter, Marie, five days after her birth. The cause of death was a severe form of spina bifida. He tells Aleteia how he got through this ordeal and fulfilled his role as a father "as best he could".

Marie's illness was detected during the first ultrasound scan. Spina bifida, the second most common cause of malformation after trisomy, is a congenital malformation characterized by incomplete closure of the spinal column and membranes surrounding the spinal cord. Charles and Perle's baby suffered from the most severe form, making surgery in utero impossible.

The doctors didn’t know how long their daughter would live: minutes, hours, or days. Nevertheless, strengthened by their wedding preparation course during which they had discussed this eventuality, Charles and Perle decided to carry the pregnancy to term, "to welcome and meet" their daughter. "The medical pressure was quite intense, but before our wedding we had decided that if we had a child with a disability, we would welcome him or her," Charles emphasizes.

Marie — accompanied, supported, and pampered by her parents — ended up living for five days. Five days that Charles and Perle experienced together, hanging on their daughter's every breath. Five days marked by pain, feelings of rebellion, and fear, but above all by an immense love for their daughter. Five days during which Charles truly assumed his role as a father. 

Marie's painfully short life gave Charles the opportunity to be a protective, loving, encouraging father. During the few days he spent in the neonatal ward of a Paris hospital, he never stopped telling her that he loved her and was proud of her. He told her stories, cuddled her, protected her... "Throughout the pregnancy and during her short life, we played our role as parents. Our choices were dictated by a single objective: to give the best to our daughter," says Charles.

She lived “only five days, but she lived a whole life. My role as a father was that of any father towards his child. Protecting her from danger, being present, talking to her, reassuring her, telling her I love her..." Charles welcomed these five days as a gift. "The greatest gift we've had in this love story is to have met her. To have been able to hold her in our arms, comfort her, smell her scent, kiss her... We’re sure that this choice wasn’t selfish on our part, because Marie reciprocated it: she had a life."

Charles and Perle went through this ordeal as a couple, hand in hand. "Perle and I had always agreed that we’d stick together through thick and thin," says Charles. "When we were told that our child would only live a few hours or days, I wanted us to live them together.”

The medical team made things easier so that Perle could quickly be given access to the neonatal unit. Charles and Perle experienced every event in Marie's life as a couple. Although that didn't mean there weren't tensions, they were incredibly supportive of each other. On the night of April 11, the three of them were in the bedroom, with Perle and Marie falling asleep against each other. Perle woke up, but Marie didn’t. "Marie fell asleep in her mother's arms to go to those of the Blessed Virgin," Charles would say on the day of her funeral.

Charles notes that he and Perle didn’t mourn in the same way. "Once, Perle asked me why I didn't cry," he recalls. He simply replied that they didn't both cry at the same time. For Charles, it's all about dialogue. It's a space the couple give themselves every evening over dinner, "to be able to talk, to discuss anything and everything."

As Catholics, Charles and Perle wanted to give their daughter the sacraments. They prepared her baptism, accompanied by the hospital chaplain, and Marie was baptized and confirmed just after her birth. "While we had no doubts about administering the sacraments, it was harder to stay close to God. There are questions for which we still have no answers: why is a baby affected by evil? Why didn’t God do anything?”

Charles recalls how difficult it’s been for them to ask priests these questions, for fear of conventional answers. But the two priests they worked with, first for Marie's baptism and then for her burial, invited them instead to express their anger and sadness at God. "The fact of associating God with our anger, with our pain, meant that we weren't cut off from Him," he says.

In addition to the short life she fought for, Marie offered her parents something else: the certainty that death is not an end in itself. "She showed us that death is not a termination, it's not the end. Life is beyond death. Thanks to her, I'm no longer afraid of death," says Charles.

Marie's “enciellement” (“entry into heaven”) took place on April 19, 2022. This is a word Charles didn't know before Marie was born, but which expresses exactly what his daughter experienced. "Marie never committed a sin. She was baptized and went straight to Heaven, so it's not a funeral but an enciellement," he points out. "And she's not an angel," Charles likes to emphasize, "she's a saint." From heaven, Marie watches over her family, which continues to grow, as a new birth is expected for Christmas.

Charles wrote a book (in French= about this experience, titled Enciellement.