The moving experiences of a doctor who prepares the last goodbye of babies

“There are no clothes of this size in stores,” says the doctor. “That is why we have to make it, so that they can be buried with dignity.”

Lilia Embiruçu works in the Department of Neonatology of the General Hospital Roberto Santos de Salvador de Bahía, in Brazil. Attends daily complex cases. But at 65, her vast experience, both personal and professional, has led her to a different place in medicine.

In the 1980s, when he graduated from the University, Brazil, like the rest of the world, crossed the AIDS epidemic.

“At that time, we worked to prevent the vertical transmission of HIV, that is, from mother to son,” he says. “But many babies and mothers ended up dying.”

It was there that he began working in palliative care, “even before that name existed.”

Lilia's vision of this type of humanized care has always led her to see beyond the disease. “A mother who has a dead baby (when the fetus dies in the uterus) is as if she herself was the urn for that baby,” he says.

“You have not yet adapted to being a mother, and you have to adapt to being the mother of a baby who is going to die. There are many existential questions that permeate this duel,” he adds.

Motivated by these reflections, he studied palliative care and, more recently, graduated in secular hospital chaplaincy, an activity that is not yet regulated as a profession.

According to Lilia, the course covers philosophy, religion, theology and spirituality.

The doctor states that it is not related to any specific religion, but to a spiritual approach that transcends religion.

The goal, he says, is to try to approach the families of a baby who will soon die, or who has just died, in a more human way.

“We work to give life while the baby has it,” he says. And for this invents unimaginable resources.

“Do not let my son suffer and do not leave me here alone” are the most common orders that the doctor claims to listen.

But there are some more unusual.

Once, the mother of a baby in incubator asked to take him to see the sea.

“I couldn't let go, it was impossible, but I knew it was important for her,” recalls the doctor.

He went to a glassmaker and asked him to make a glass box.

“He said he would do it and give it to me the following week, but that baby didn't have all that time,” he says.

“I told him that it had to be for that day. He accessed only after I told him the whole story,” he says.

With the glass box in his hand, he filled it with seawater, he added sand and shells, and Peléo to be able to put the object to the ICU. And he got it.

“The mother got excited when she saw that the sea was there, next to her son.”

In addition to tiny clothes, Lilia makes small coffins.

They are wooden boxes, a little smaller than a shoebox, which varnks and decorates.

With pieces of the wedding dresses that your son designed sews small white satin mattresses.

And if the family is Catholic, it makes a little rosary.

“These parents in the neonatal intensive care unit take away the right to fatherhood,” he says.

His work, ultimately, is to transform early death into a lived life as long as possible.

To do this, we assemble souvenir boxes with photos, family letters, a USB memory with the baby's heartbeat, an ultrasound and any other element that the family considers a memory.

And when there is no memory, the doctor creates them.

Remember the case of a pregnant mother of a baby with several malformations that would die as soon as they were born.

“I always tell parents to take photos of the baby outside the uterus, although they do not want to see them immediately, but as a memory,” says the doctor, who offered as a volunteer to take the photos.

In an interview with BBC News Brazil in 2023, psychologist Daniela Bittar, specializing in maternal duel, spoke about the importance of these memories for the grieving process.

“When a mother loses a child at 2 or 3 years, people move precisely because they put themselves in place and clearly understand the depth of her pain. This child had a name and had emotional memories with many people,” he said.

“When a baby dies in the uterus, he has not been seen, he has not created an emotional memory with anyone but his mother. That woman is completely connected to the child in a psychic and visceral way, but does not experience the pain and penalty understood by society,” he says.

In the story told by Lilia, the mother did not want to take a picture of the baby, and her desire was respected.

However, months after the birth and subsequent death of the baby, the mother looked for the doctor.

“He wanted to see his son at all costs, even asking the body,” he says.

Knowing that it would not be possible, Lilia said she would think if she were.

“I went to the police and asked the expert in fingerprints to make a portrait of the baby,” says the doctor.

The parents did not accept him immediately, since they had never seen their son's face.

But Lilia convinced them. “I told them to describe their son as they imagined.”

And so, in tears in the police station, the expert in fingerprints made the drawing and the family left with the only image of his son in his hands.

The stories that the doctor tells are marked by death, but in reality, they talk about life.

They are ways that the patient and their relatives live live the time they have left, whether years or minutes.

In his opinion, saying goodbye is an important ritual to cement existence.

Therefore, he believes in the power of small clothes and a small coffin.

And, even if there is not even a body to say goodbye, symbolism persists.

“I struggled with a nurse to get a dirty compress from the bag of dirty clothes next to the bed,” says Lilia.

It was there that the mother expelled the lost fetus. And that buried object symbolized the farewell.

“We focus too much on the biological and very little on the biographical aspects of the family,” he says. “Actually, the road is reverse.”

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