ICU mothers: hear stories of women who live with their babies in ICUs

There are 16678* beds in the country in intensive care units for newborns and children🇧🇷 Of this total, one fifth is occupied by chronic patients in prolonged hospitalization for months or years. Almost 3.4* thousand Brazilian women are trapped in these ICUs while the children defy death. Often without seeing the sunlight and the color of the street, they exile themselves from professional and personal life, leaving their husband and other children aside. Surrounded by monitors, catheters, tubes and respirators that enliven their little ones, they face a game of all or nothing.

They still have to learn to be the mother of those who are hanging by a thread. They must deal with a fragile body, which cannot even suck your milk and warm up in your lap. The child’s routine does not belong to them either – doctors, nurses, physiotherapists and speech therapists decide everything. At first sight, the group looks more like a battalion of intruders interfering in the most tender, primitive and indispensable relationship that is established between mother and baby at the beginning of his existence. It’s needed lucidity – some interviewees also mention spirituality – to assimilate the reality of an ICU.

warrior mothers

First, for the unexpected. The pregnant woman enters the maternity ward to give birth to a dream and, in its place, she is faced with incurable diseases. In general, this is the plot: they lose ground with the news that the baby will not leave the hospital. This was the case of photographer Daniela Nunes Frison. Even informed by the fetal karyotype exam that her son would be born with Edwards syndrome, she only saw the translation of this into practice. “Raphael left the delivery room straight to the ICU at Pro Matre, in São Paulo. He never went home,” he recounts. It didn’t take long to realize that he had lost his protagonism. “There was an emergency, my baby needed the doctors to save himself.” At 4 months old, the boy was taken by ambulance to Hospital Infantil Sabará, where he occupies one of the 28 beds in the pediatric ICU, home to four other chronically ill children. “I’ve read everything on the subject,” says the photographer, pointing at her laptop. “The syndrome causes neurological, heart and lung problems, making the bearer incompatible with life.” Despite this, the mother sings to her son, talks. “I say that he has a sister, Giovanna, who is waiting for him outside. I ask you to resist and straighten up, because the worst is over.”

The summary made by tour guide Patrícia Longo Schneider is also real and precise: “I lost my powers”. She felt helpless when her son was revived in cardiac arrest, rescued from seizures and intubated. Patrícia, the agile and experienced mother of the second trip – she also has a girl called Beatriz, she found herself lost countless times. Her baby Bernardo, had both kidneys removed in an attempt to circumvent the Denys-Dhash syndrome, which produces tumors in these organs. “I sulked in my corner watching the rush around him. The most she did was touch the little head lightly, afraid of disconnecting cables that connected him to the machines. I only put him on my lap after three months of hospitalization. I thought, ‘I’m a mother, he’s mine, again’.” Currently, the baby undergoes daily sessions of hemodialysis and will have to gain weight to face a kidney transplant.

A trait common to the interviewees: the hopeless hope for better days🇧🇷 “Medicine is not an exact science and it is not up to the doctor to be arrogant. It cannot be said that they are wrong in their optimism”, says Eduardo Troster, ICU medical coordinator. “Before, babies like these, considered unviable, died. With advances in medicine and technology, we have more and more chronic and complex patients in the ICU. We raise a generation of children who depend on support for everything: tracheostomy to breathe, gastrostomy to feed, prevention of osteoporosis, because they are immobilized, care to avoid thrombosis and pulmonary embolism, among others.” The mother’s profile has also changed. “She ends up becoming an expert on that child and gives information to the team. She puts on a mask, participates in invasive procedures, is one more person to help avoid mistakes”, she lists.

The participation of mothers in this scenario is recent.”Only in 1990, with the Statute of Children and Adolescents, hospitals were forced to accept one parent full-time”, recalls Lucília Santana Faria, medical coordinator. “Before, they visited their children for an hour and had to leave. They were crying at the door, the children inside.” Even today, there are doctors who complain that mothers get in the way and any change in the monitor puts nursing in a panic. “I disagree, the benefit is greater. The child stays calm, feels safe, creates conditions for improvement”, reports Lucília.

in last place

Women pay a high price for such bravery, sacrificing their own health. “They forget about themselves, ignore symptoms, and are often close to becoming depersonalized”, says Germana Savoy, a psychotherapist. “We do everything to humanize the ICU, but it happens.” She explains: “Unauthorized in mothering, because the team knows more than they do, they can evade their role, leave the baby. Or the opposite occurs, when they become too involved with the child’s pathology, they break social, family and professional ties”. To endure, they adapt to the environment, which is aggressive. “The hospital aesthetics, the noise of equipment and alarms, the dramatic emotions in the corridors, everything is too heavy”, observes Germana. “And they end up dependent on the environment, like the victim of their abuser.” There is also exacerbated guilt in mothers who consider themselves responsible for the child’s anomaly. And still depression, panic syndrome, sleep and eating disorders.

*Numbers surveyed in September 2011