With 20 housing modules already available and additional 10 modules under construction, the largest Pediatric Palliative Care Center in Italy, made by the Bambino Gesù Children’s Hospital, opens in Fiumicino. It is the first facility of this kind in the Lazio Region, where according to estimates around 1000 children with severe diseases requiring highly complex healthcare, and needing palliative care will be welcomed.
It is a 5-storey building surrounded by green areas and close to the sea, restored thanks to the contribution of small and large donors including Fondazione Angelini, Andreotti & Brusone Philanthropy Fund, Fondazione Giulio e Giovanna Sacchetti, and duchess Maria Luisa Magistrati Gaetani D’Aragona.
«We took another important step forward in assisting the most fragile children» said Bambino Gesù President, Mariella Enoc. «The Center aims to be a welcoming space, like a large house in which accompanying young patients or helping their families to assist them in the best possible way. This is because – as Pope Francis says – it is always possible to treat, even when it is not possible to heal».
In the last few days, the Center welcomed some Ukrainian patients escaping the war with their families. There are 5 children with very severe diseases among the over 60 patients already treated by the Hospital.
THE UNVEILING CEREMONY
WITH SECRETARY OF STATE OF THE HOLY SEE,
CARDINAL PIETRO PAROLIN
The unveiling ceremony took place today in the presence of the Secretary of State of the Holy See, Cardinal Pietro Parolin, the President of the Lazio Region Nicola Zingaretti, the Mayor of Fiumicino Esterino Montino, and of the main donors that contributed to the development of the facility.
After the blessing by Monseigneur Gianrico Ruzza, Bishop of the diocese of Porto Santa Rufina, some contributions were made on the subject of palliative care by the Director of Healthcare Planning of the Ministry of Health Andrea Urbani, the Councilor for Health and Healthcare Integration of the Lazio Region Alessio D’Amato, the Director of the Emergency, Reception and general Pediatrics at the Bambino Gesù Hospital Alberto Villani, and the Head of Pediatric Palliative Care Center Michele Salata.
A STRUCTURE SURROUNDED
BY NATURE, NEAR THE SEA
The new Pediatric Palliative Care Center is in Passoscuro within an area of about 11 thousand square meters, not far from the Hospital of the Holy See in Palidoro. In the past, this facility hosted a nursery school managed by the Little Sisters of the Holy Heart, a female religious institute devoted to the management of schools, reception centers for minors and women in trouble, mountain and sea camps, and nursing homes for elderly people.
The restoration works started last September and involved both the interior – where the classrooms for children were replaced by the housing modules – and the exterior, where a large park-garden was arranged, representing the true point of strength of the project, that almost reaches the sea. The path is accessible by wheelchairs and stretchers, and includes a recreational area and a playground, as well as a citrus orchard, all areas conceived to welcome entire families, including the siblings of hospitalized children.
A HOUSE FOR FAMILIES
The main building measures 4,160 square meters and has 5 floors, one of which is a basement, and another is a mezzanine. The mezzanine floor and the first floor include 20 housing modules that will increase to 30 as soon as the restoration works at the second floor are completed.
Family members will have the chance to stay with the patients, therefore the rooms – all with 1 ben – are large, with bathrooms and a coach or sofa-beds. Each module has a kitchen to cook the food that children like, in addition to the meals provided by the facility. The screening, treatment and support areas were carried out at the ground floor. The facility also includes a common space with the possibility to cook. The chapel is always available to meet the spirituality needs of family members.
The Center is devoted to the reception of children and adolescents with rare, incurable, and highly complex caring diseases. It provides the reception and welcoming of patients and their families: not only parents, in fact, but also brothers and sisters are impacted by the situation of the disease and the caring needs. The Center ensures the treatment and the careful control of symptoms, including pain, and of concomitant pathologies, the particular attention paid to nutrition, and related problems. However, the Center also takes care of psychological, relational, spiritual, social and educational needs.
In Italy there are about 35,000 minors – 1000 in the Lazio Region alone – that cannot go immediately back home after their hospitalization, as they need highly specialized cares or need that their parents acquire all the necessary skills to take care of them. Residential hospitalization may therefore represent a temporary solution able to provide families with a period of relief, or allow a revision of the caregiving plan that needs a deeper monitoring.
Among of the goals of the Center there is the possibility to provide a better quality of life in the terminal stages of diseases. This approach reflects the attention to the right to care for all patients, including when there is no hope to heal, stated in the Charter of Rights of Incurable Children of the Bambino Gesù Children’s Hospital, drafted in 2018 following the controversial and painful events of little Charlie Gard and Alfie Evans.
The Center is part of the regional network of pediatric palliative care. It works in close collaboration with local facilities, ensuring the link between the hospitals where patients are hospitalized and the homecare of LHUs and general pediatricians. A palliative care center, in fact, is not a long-term care. The goal is to allow patients to return their homes as much as possible, but in safe conditions.
To this end, the Center ensures the proper training of caregivers and intends to represent a point of reference for the territorial medical and nursing staff involved in the homecare. The coordination between the various actors involved in caregiving activities will allow families, once they return home, not to feel alone in the care of their family members; consequently, this approach will reduce the unnecessary accesses to the Emergency Units in case of worrying symptoms that parents are unable to manage.
The renovations of the Center in Passoscuro entail costs of around 3 million euros, two thirds of which covered by the contribution of small and large donors through the “Mi prendo cura di te” (“I take care of you”) campaign developed and implemented by the Bambino Gesù Onlus Foundation.
Donors include Fondazione Angelini, Fondo per la filantropia Andreotti & Brusone, Fondazione Giulio e Giovanna Sacchetti, duchess Maria Luisa Magistrati Gaetani D’Aragona, as well asAeronautica Militare, Guardia di Finanza Fondazione Mediolanum, 1-618, Federazione Italiana Giuoco Calcio (FIGC), Siderferro, Ferrovie dello Stato, La magia di Lelino Association, Giacomo Ponti e Deborah Zani, Dream Rider. Furthermore, many donations were made by natural or legal persons, or directly online.
“We feel extremely grateful to them – said the Secretary General of the Bambino Gesù Foundation Onlus, Francesco Avallone – as they allowed us and still allow us to carry out an extraordinary project for the care and the support to the most fragile patients“.
Thea Paola Angelini and Sergio Marullo di Condojanni, Vice President and Director of the Angelini Foundation, respectively, commented: “The attention to the most fragile people is one of the guiding principles of the Foundation, which has always been committed to supporting the communities and territories where the Angelini Group operates. We are happy we contributed to make this project a reality. Thanks to this project, young patients and their families will be welcomed in a beautiful and protected environment such as the Palliative Care Center of the Bambino Gesù Children’s Hospital“.
Lamberto Andreotti and Pino Brusone from Fondo per la filantropia Andreotti & Brusone stated: «We are pleased to participate in this project, because we appreciate the high medical and scientific quality of the Center, as well as the generous and Christian spirit with which young patients taken care of. The project fully complies with the mission and objectives of our Philanthropic Fund and the Andreotti Brusone Foundation».
Giovanna Sacchetti, President of Giulio e Giovanna Sacchetti Foundation Onlus said: «I am honored to participate in this project: the Giulio and Giovanna Sacchetti Foundation has been operating since 2013 in the promotion of scientific research and development and has a special and ongoing relationship with the Bambino Gesù Children’s Hospital in Rome. It was therefore natural for us to support such an important initiative in Italy that focuses on young patients by giving hospitality to entire families who can be close to their children, providing all the support they need».
Duchess Maria Luisa Magistrati Gaetani d’Aragona underlined: «I could not but positively react to President Mariella Enoc’s invitation to become a sort of “ambassador” of the hospital, a position that I hope I will fulfill with passion and enthusiasm. Today, here in Passoscuro, a small miracle has been accomplished: the construction of the Center for Pediatric Palliative Care has been completed and I hope that others – like me – feel such an involvement and give their contribution to future initiatives aimed to welcome and treat children from all over the world».
The Center for Palliative Care currently has 20 housing modules available to families. The works for the construction and preparation of additional 10 modules have already started. Other works will involve the completion of the furnishings and the development of outdoor spaces, the playground and the equipped, a new power station and a large parking lot. The additional costs amount to approximately 3 million euros.
«In these dramatic times marked by the war at the gates of Europe – said the Hospital President Mariella Enoc – we continue to invest in the care of children, the most fragile ones, the so-called incurable ones, who however continue to need care, together with their families. It is the paradox of our world: there are those who throw bombs on children, and those who do anything to save them with the best care, research, and to accompany them with humanity. Thanks to all who continue to believe in our mission».