In September he started school and – he jokes – his favorite assignment is recess. Now he has not set foot in the hospital for two years, but his life is an uphill one marked by a double kidney transplant and a double wait: the one he had to keep, first, for his body to develop enough to withstand the intervention and, second, the cause of a failed organ that had to be replaced again.
Valentín's fight (Barcelona, 2014) dates back to five days after he was born, when his mother realized that he could not open one eye. At the hospital they detect that he is suffering from a cerebral hemorrhage, they drain the blood from his head and manage to save his life. This premature accident will mark the beginning of a day to day rooted in the hospital. A battle against genetic doom.
Valentine suffers from the so-called Dionysius Drash Syndrome, a confined minority that affected 200 people in the world alone. The architecture of her kidneys is defective. She has the bar that filters the residues of impaired metabolism and suffers from albumin losses, the protein that regulates the internal environment. Doctors know that the mutation will sooner or later take the kidney organs from her. There is the hope that it will not happen until adolescence, but after three months they stop working… she needs a transplant. 2014 season.
Every year, 70 interventions of this type are carried out in Spain on the kidneys of children and adolescents. This figure represents only 1.5 percent of patients who need renal replacement therapy, since most are adults. Dr. Gema Ariceta, a neurologist and pediatrician at the Vall d'Hebron hospital, says that children's organs are especially difficult to obtain. The number of donors –luckily– is small and the waiting lists tend to get longer.
As Valentín, moreover, is still too small, he cannot be operated on. A catheter is implanted in his stomach and he begins a dialysis process that will last for years and a half. Every night, they connect him for twelve hours to a machine that cleanses his kidneys, cleanses his blood and removes excess water. School hasn't started yet and his parents live for him. They are also protagonists of this story.
transplant failed
When the kidney finally arrived, in 2017, Ariceta agreed to intervene to weigh that little Valentín barely weighed 15 kilos. A pediatric transplant is a collective process in which more than one professional may have participated in direct management. However, there is an organ available for a patient, a multidisciplinary team to perform the extraction, the sea in the Vall d'Hebron itself or traveling to the hospital of origin -in most cases-. Before extracting it, a surgeon or specialist in the organ in question confirmed its suitability for implantation. At the same time, investigate the recipient's family, if communication is maintained throughout the procedure, and prepare the operating room for the surgical act. Here participants are professionals from anesthesia, surgery, nurses, perfusionists, auxiliaries and providers. Also professionals from services such as Clinical Laboratories, Radiology, Infectious Diseases, Immunology, Pathological Anatomy, Emergencies and Pharmacy. Before starting the process, the Pediatric Intensive Care Unit and the Blood Bank are alerted so that they are ready.
Despite the team's coordination and effort, Valentín's first transplant goes awry. When he replaces an organ he runs the risk of rejection. To avoid this, the patient must take immunosuppressants for life, which mitigate the body's negative response. This obviously decreases the body's defensive capacity and increases the risk of infection. Precisely, a cause by parvovirus B19 – a common pathogen in schools – destroys the organ received. We have to start over.
Months later comes the pandemic, the state of alarm and society upside down. Everything coincides with the second intervention, which will be the last. Valentín's parents are perhaps experiencing the months of greatest uncertainty. They sleep in shifts at the hospital and take care of Matilda, the older sister. After a week in the ICU, with some difficulties, the deserted streets and the applause at 20:00 p.m., they will finally reach the long-awaited normality.
More pediatric transplants in the Vall d'Hebrón
The Vall d'Hebron university hospital in Barcelona is the second center in Spain to exceed 1.000 pediatric transplants. Since 1981, he has successfully performed 442 kidney, 412 liver, 85 lung and 68 heart transplants.
Thanks to advances in the surgical treatment of children with congenital heart disease, in 2006 the Catalan hospital performed the first pediatric heart-lung transplant in Spain. In addition, the center is a leader in pediatric lung transplantation in Spain, having performed 58% of these interventions between 2016 and 2021.
