The José Luiz Egydio Setúbal Foundation was set up thanks to the wishes of the institutor thereof to leave a legacy for the improvement of the health of Brazilian children.
The arrival of the Covid-19 pandemic changed everyone’s minds. The Foundation reorganized its budget and allocated BRL 1 million for low-income families based on partnerships with different organizations, and the donation of masks for the Santa Casa Hospital in São Paulo and the Tide Setúbal Hospital.
The 5th International Sabará Congress on Children’s Health was also affected by the pandemic. Carried out 100% online, this event brought together 1,700 participants and had the fight against Covid-19 present in different work projects. Among the main issues addressed in these symposia, we have pediatric surgery, neurology, immunodeficiencies and allergies, and challenges faced in the pediatric consulting room.
The Sabará Hospital has adapted itself to the pandemic, with the launch of telemedicine services, the reorganization of the surgical flow, and services provided by emergency departments and the ‘Sabará in Schools’ program, aimed at promoting the safe resumption of the school routine. In addition, the hospital stayed at the forefront of pediatrics, expanding the care given to children living with chronic diseases, with the launch of the Center of Excellence in High Complexity, the service of navigator nurse, and the Program for Fetal and Neonatal Therapy.
The Foundation continues to expand the scope of activities, with the signing of the National Pact for Early Childhood and integration into the Worldwide Initiatives for Grantmaker Support (Wings), an international network that promotes the development of social investment.
At PENSI, the team commemorates the unveiling of its new facilities – twice the size, the institute now has new work rooms, auditorium, library, and a Center for Realistic Simulation, that makes it possible for interns and resident pediatricians reproduce real situations using a robot identical to a child.
Other developments come from the area of education. There is the creation of residence in general pediatrics and intensive pediatric medicine, in a joint project between PENSI and Sabará. In the case of the partnership with Educatie University, the graduate course in Child Psychology and Health presents the approach known as Child Life Specialist, a clinical specialist who is part of the multidisciplinary team of the hospital, and who helps children and families to better deal with hospitalization.
Together with the program of the Congress, there was the 1st Forum of Government Policies in Children’s Health, which had the participation of five representatives of candidates for the presidential job. A panel of experts looked at the main issues involving children’s and teenagers’ health in Brazil, from mortality to the lack of social protection.
In yet another pioneer action, this foundation brings over to Brazil a new type of health professional, known as the Child Life Specialist. Specialized in the development of the child, the Child Life Specialist helps children and their families handle situations of stress and uncertainty, during hospitalization. Starting out from play activities, preparation, and activities of self-expression, the expert works with the multidisciplinary team, to bring a milder experience to the young patients.
An international partnership was signed with the Universities of Harvard, Maryland and Tulane, to bring over to Brazil a study about the impact on neurological and psychosocial development of children in shelters. This research study entitled Impact of Intervention on Institutionalization is being led by the PENSI Institute, in partnership with the Maria Cecília Souto Vidigal Foundation, with the support of the Courts of Justice of São Paulo and the Department of Social Assistance and Development.
With over 1,600 participants, the 4th Sabará International Congress on Children’s Health analyzed everything from encompassing themes, with an increase in child mortality and obesity among children and teenagers, to specialized care, such as treatment with oxygenation of the extracorporeal membrane (OECM) at the Intensive Care Unit (ICU) of the Sabará Hospital. The eleven foreign speakers present a current approach for the research studies about autism, Down’s Syndrome, radiology, respiratory diseases, immunological diseases, and nutritional disorders
The good financial results have encouraged the Upper Council to set up an asset fund based on the funds that have been raised by the hospital, in order to finance the activities of the PENSI Institute and the social projects in the area of children’s health. Accompanying this movement, the foundation reorganizes its structure of governance, with the hiring of executive leaders.
We held the first edition of the Fantastic Trip – some 120 volunteers spend the weekend dedicating themselves to the construction of two squares in the neighborhood of Jardim Lapenna, in the East Zone of São Paulo.
One year of new developments within the PENSI Institute. In partnership with professor Antônio Condino Neto (ICB-USP), the PENSI institute had its first Project approved by the Brazilian Ministry for Health as part of the National Program in Support of the Health of the Disabled Person (PRONAS/PCD). The Project for Neonatal Sorting of Immunodeficiencies studied the use of innovative technology in the early diagnosis of diseases and syndromes linked to immunity problems. With data of over 26 thousand children from 9 different Brazilian States, its results were crucial so that the expanded Newborn Screening Test could become a Government policy of the SUS, the Brazilian National Health Service.
With a new name, the 3rd Sabará International Congress on Children’s Health points to an expansion of the concept of health, including the biological and psychosocial dimensions for children and teenagers. The participants, totaling almost 1.800, have a program that explores the multi professional and multidisciplinary dimensions of childcare.
The NGO Autism and Reality becomes part of the PENSI Institute. Set up in 2010, this organization brought together families in the autistic spectrum and health professionals, to facilitate access to scientific information about this disorder.
Already part of the National Early Childhood Network, the Foundation is now expanding their field of activities in this area, on becoming part of the Science Nucleus for Early Childhood (NCPI). Next, they carry out a partnership with the Tide Setúbal Foundation, which carries out projects for tackling inequality in the outskirts of São Paulo. This action is the base for the research study on ‘Impact of day care centers on children in vulnerable territory’, launched in 2017, which has the main goal of contributing to Government policies for healthy development of early childhood.
At the 2nd Sabará International Congress of Pediatric Expertise, the main point addressed is full service in pediatrics. With a significant expansion of the public – almost 1,600 participants – the event opens space to the work of nurses, physiotherapists, psychologists, volunteers, professionals specialized in humanization of treatment, and researchers. Another important element is the presentation of the São Paulo State Society of Pediatrics, and the National Network of Early Childhood, which discusses the importance of playing.
A major conquest for the Hospital: the Sabará hospital receives accreditation from JCI (Joint Commission International), the main certifying body for quality of health institutions in the world. With strict appraisal of over 1,000 items including service, management, infrastructure and professional qualifications, Sabará Hospital had confirmation of the international level of excellence shown by its services. So far, only four pediatric hospitals outside the United States had received this certification: two in China, one in Italy, and the Sabará Hospital in Brazil.
Now bearing the name of the José Luiz Egydio Setúbal Foundation, the institution now has its activities geared to two main aims: that of provision of medical and hospital assistance, represented by the Sabará Children’s Hospital, and that of teaching, social projects, and volunteer work, these being the responsibility of the PENSI Institute.
In June, there is the establishment of the PENSI Institute — Research and Education in Children’s Health, a civil society organization of public interest (OSCIP) responsible for the areas of education, teaching, research and social projects of the Foundation. Next, the Research Ethics Committee (REC) of FJLES, which looks into ethical aspects of research studies on children and teenagers, is approved by the National Committee of Ethics in Research.
To commemorate the Hospital’s Golden Jubilee, there is the 1st Sabará Congress of Pediatric Expertise. With over 300 speakers, Brazilian and foreign, the event has the participation of the presidents of the Brazilian Society of Pediatrics and the São Paulo State Society of Pediatrics, former senator Marina Silva, neurologist Dr. Miguel Nicolelis, and sociologist Eduardo Giannetti.
This is a great year, kicking off with the unveiling of the new facilities of Sabará Hospital, at 1987 Angélica Avenue. The festivities started with the presence of São Paulo Mayor Gilberto Kassab and the secretaries of Health and Urban Development. With ludic and interactive environments, the new facilities, with an area of 17 thousand square meters, has 104 hospital beds, of which 28 in Intensive Care Units (ICUs). This Project, created with the child at the center of the experience – has the signature of Diana Malzoni, Luciane Vaz, and the doctor and architect Domingos Fiorentini, who is one of the reference benchmarks in Brazilian hospital architecture.
Next, there is the launch of the Education and Research Center, which would be the embryo of the PENSI Institute. The initial challenge is that of training health professionals active in the field of paediatrics and spread knowledge about children’s health to families, carers, and the public in general.
This was also the year when the Sabará Hospital became a non-profit foundation, with financial gains being used for philanthropic actions.
The year started with the launch of the Quality Program to promote a steady improvement in services and in the performance of the different professional staff and departments of the hospital. Next, it is the turn of the Humanization Group, that seeks an institutional policy based on the recovery of humanization through actions such as thematic festivities, use of therapeutic toys, and photo galleries in the Intensive Care Unit (ICU).
Start of the Child Project (Projeto Criança), which established the construction of a new hospital and the transformation of a limited company (sociedade anônima) into a non-profit organization, dedicated to research and education in the field of pediatrics.
The history of the Foundation starts with the purchase of the Sabará Children’s Emergency Department and Hospital, which had operated for over 40 years at its former site on Dona Antônia de Queiroz Street. The original idea was that of using the resources as generated by the hospital in moves for the improvement of the health conditions of vulnerable children and teenagers in Brazil. During this period, the Sabará Children’s Hospital places its bets on the enhancement of human resources and services, seeking quality and provision of humanized services. In the new phase, this premise is followed strictly, even in the decoration of the facilities.
Memory and Reference
In 2018, there was the start of implementation of the Centre of Memory and Reference. The main purpose of this project is that of being a permanent program for capture, organization and preservation of documental records of the Sabará Children’s Hospital and of the PENSI Institute, thereby promoting their role in the development of pediatrics in Brazil.
The first work module, carried out by historians and documentaries, concentrated on the mapping and treatment of the collection of historical interest and value, on research into external and internal sources, the production of an institutional chronology, on a study for the conception of the portal and the database, and the planning of the oral history program. The historic collection and the content produced shall be made available to the staff and partners of the Foundation.
10 Years Book
This book tells the story of the formation, and the first ten years of operation, of the José Luiz Egydio Setúbal Foundation (FJLES). Raízes e Asas (Roots and Wings) describes how Brazil’s largest institution specialized in children’s health was created and set up. It also notes the learning and activity in social initiatives dedicated to improvement of quality of life in infancy; research and teaching of scientific knowledge with a focus on child health; and medical assistance and care for children. Due to its universal and unique features, this is also a picture of the period of gestation, birth, first steps, and infancy of an organization of the ecosystem of philanthropy and private social investment in modern Brazil.