A life in the ICU: Little Fabio’s race against time as he awaited a transplant

Little Fabio has spent most of his almost three years of life in hospitals. Now he only visits them, but for a long time, intensive care units (ICU) were his home. Above all, the Vall d’Hebron Hospital in Barcelona. There, at just 18 months old, he began a race against time to recover his lung function, lost due to a complex autoimmune disease. The illness disabled his lungs forever and led Fabio to an uncertain future: only a transplant could save him, but time and the context were against him.

Keeping him stable, without any setbacks or unexpected attacks by his illness, was already a medical challenge for the Vall d’Hebron team; but to that was added the task of finding a donor compatible with such a small child. Hooked up to a machine that oxygenated his blood for him, his family tried to turn the ICU into their home and hide the uncertainty in everyday life: within the four walls of the hospital, waiting for the transplant, Fabio even relearned to walk.

The transplant took place just over a year ago and now, after being discharged from a hospital in his native Huelva, Fabio returns to Barcelona every two months for the required check-ups. During one of these visits, his parents and the medical team met with EL PAÍS, while the unruly little boy entertained himself on the floor playing with a ball. According to data from Vall d’Hebron, only one patient has ever spent more time in its paediatric ICU connected to the extracorporeal ventilation system (ECMO) than he did.

Lucía Contreras, the boy’s mother, says that Fabio started to feel ill in the summer of 2022. He was listless and had a fever. Then spots appeared on his skin. The fever kept coming back. Time passed and the boy did not improve. “At 11 months old he got worse. He stopped eating, he stopped drinking, he lost weight, he was crying all day... And we took him to the Juan Ramón Jiménez Hospital [in Huelva, where the family lives],” Contreras says. It was his first admission. It lasted a month.

The child was still ill and there was no clear diagnosis. He was referred to the Virgen del Rocío Hospital in Seville, where he was hospitalized for another four months. With powerful corticosteroids they camouflaged the symptoms, stabilized him, and even gave him a three-day “vacation” in the health center, the family says. But the joy was short-lived. “On the second day, he went into the ICU with a pneumothorax. It was the worst moment, 47 days watching him die,” says Contreras.

The family’s hell had begun. Days and days of uncertainty, without knowing what would become of Fabio in even a few hours. “Every day it was the same: he was getting worse and there was no sign of any improvement. In one week we were told three times that he might not be able to go on,” says the boy’s father, José Ángel de los Santos. Fabio suffered from dermatomyositis, an autoimmune disease that affects the skin and muscle function, and which, in his case, had seriously damaged his lungs.

The boy had already been sedated for several weeks in an intensive care bed, and options were running out. “As a last resort, they suggested putting him on ECMO because his lungs were already like an air filter. But we said that if it was to prolong his life by a month or a week, then no; that we wanted to donate the organs and we didn’t want him to burst,” the boy’s father admits with fortitude. But the doctors insisted. ECMO, which is a machine that oxygenates the patient’s blood and breathes for them, doesn’t cure or treat anything, but it is a way of gaining time. And that was what they needed. Time. Because there was one possibility, the specialists at the Seville hospital told them: a lung transplant.

It was risky and unusual, but a medical team from Vall d’Hebron had assessed the case and agreed to try it. So, at just 18 months old, in mid-August 2023, the little boy was transferred to Barcelona.

The Catalan hospital was not entirely confident either, admits Alberto Jáuregui, head of thoracic surgery and lung transplant at Vall d’Hebron. “Fabio’s complexity was based on two things: on the one hand, he was a very small child and it is very difficult to find a donor of that size. And the other is that Fabio had to be connected to ECMO in order to be able to perform a surgery we had no idea when might take place; it could be the next day or in six months. The great difficulty was keeping Fabio well during all that time, while we waited for a suitable donor.”

The scenario was uncertain and there were not many cases similar in age and circumstance to compare Fabio’s with. The youngest child who had received a transplanted at the hospital, one of the leading centers in Spain for pediatric transplants, was four months old — Fabio was already around a year and a half old — but they had never operated on a child with the pathology that he had: “Several things came together: an illness that is not common, in a small child and with a lot of lung involvement,” says Nacho Iglesias, the pediatric pulmonologist who has followed the child’s evolution at Vall d’Hebron.

The complexity was huge but the family saw, for the first time in a long time, “a ray of light,” Contreras says. At least in the pediatric ICU at the Catalan hospital, Fabio could wait awake, without sedation, for his transplant to arrive. He was limited by the conditions of the ICU and the ECMO cannulas, yes, but he could interact with his parents and enjoy a little time as a family. And that was more than they had had in many months. “There came a time when we were content to live as we were. In an ICU, but having him with us. After 47 days with him asleep, half dead, here they gave us hope of living with him,” recalls the father.

Turning the ICU into a home

Hundreds of miles from his real home, on the other side of the country, the Vall d’Hebron pediatric ICU became an improvised home for the family, Contreras explains: “It becomes your home and you make the room as pleasant as you can for everyone.” Within those four walls, Fabio returned to being the child he had been before the disease took everything away from him. The weeks of sedation, without getting out of bed, had taken their toll on him and he had lost a lot of muscle mass and psychomotor skills, but he soon regained his energy. He relearned to eat and even to walk, his parents recall.

The idea of the specialists was to combine certain routines with all the necessary medical check-ups to avoid the feared complications that threatened the therapeutic plan, explains Montse Pujol, an intensivist at the hospital: “The biggest difficulty was the uncertainty of knowing when the time would come. Our priority was that, during this waiting period, Fabio could normalize his life as much as possible — within the limits of a paediatric ICU — to favour his psychomotor development.”

The transplant came five months later, in January 2024. The operation lasted about six hours and both lungs were transplanted. It was successful, although the ICU remained the family’s home for a few more months and they were not able to return to Huelva until last September.

The operation has halted the countdown that was affecting Fabio, but the disease is not cured and the family knows that they cannot let their guard down. The hospital will probably never stop being his second home, his mother acknowledges: “We are the parents of a child in hospital and we know that we have to go back. So we take it day by day, trying to enjoy him and make him happy.”

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