Officially children do not die, at least in rich countries. Aware of the negative connotations of the expression “palliative care”, the professionals of these specialized units for minors even choose other names such as “hospitalization or home care”.
However, in Spain 15,000 children and adolescents live with a life-threatening disease and nearly 2,000 die each year. The testimonies of the newly created Peer Support Group for Families in Palliative Care break taboos about this ignored reality in project631 launch.
“The moment my son Daibel died, I promised him that everything I had learned from him I would use to help other families,” says excitedly Ana Isabel Íñigo, one of the promoters of the group and author of the blog crianzamagica.com. But Daibel’s legacy, who lived for 6 years and 4 months, goes further: “I want to do my bit to achieve humanized health care in all areas,” says his mother.
Arising from the Family Working Group of the Spanish Society of Pediatric Palliative Care, this new community meets once a month in virtual format and, in addition to families, has pediatricians, nurses, psychologists, social workers and volunteers.
Their goal is not just to share experiences and learn from each other, but to provide resources, offer training, contribute to collaborative research, and participate in ethical debate.
For Matilde Pérez, co-founder of the group with Ana Isabel, everything her daughter Valentina taught her was “too valuable to put away in a drawer.” Valentina was born in 2016 and lived for almost a project631 year.
She was the first patient in a team formed, among other professionals, by the pediatrician José Vicente Serna and the nurse María Pérez.
“At the beginning we were Vicente, me, his motorcycle and a backpack with which we went to see the patients,” recalls Maria, who works at the Sant Pau hospital.
For people, pediatrics is giving bottles or treating bronchitis. a social stigma towards these children with neurological problems They have zero visibility and their families do not receive the help they need. ”
Associating children with serious illness and death is counterintuitive. Childhood cancer has some visibility, but only 20% of pediatric palliative patients are oncological vast majority suffer from cerebral palsy, rare genetic diseases, minority syndromes and other neurodegenerative pathologies.
The palliative and pediatric chronicity is a discipline that has just been born and has a thousand deficits at a social, psychological and medical care level,” says pediatrician José Vicente Serna, from the Parc Taulí de Sabadell. patients and their families, these deficiencies would have a lot to do with the fact that “in this country the right of children to a dignified death is not yet recognized.
The families celebrate this step but warn that public administrations must be watched “with a magnifying glass” so that they provide these services with the necessary resources: “The families of the most vulnerable creatures cannot be left to have to look for life