"I have a family that doesn't live in my house. With that team I feel protected and welcomed and I know that if my son has any sudden health problem I can call and get an answer. They don't just take care of Lúcio, but they also care about me".

These are the words of Judite Mussica, mother of a child with cerebral palsy and lupus.

The pediatric palliative care team has already accompanied 45 children and their families since it opened, five years ago.

Of these, seven reached adulthood and moved to the adult service, two were discharged and ten died. Currently, 26 minors with complex chronic diseases are being followed.

Formed by a doctor, four nurses, a social worker and a clinical psychologist, the team's main goal is to promote the improvement of the patients' quality of life, accompanying the patients at an intermediate level.

"We have about 280 children in our area of influence with all kinds of neurological pathology, oncology, cardiac or metabolic diseases. The main ones are neurological related to cerebral palsy", said Margarida Henriques, a specialist in neuropediatrics and coordinator of the team.

As she explained to Lusa, the Leiria hospital, which is part of the Local Health Unit of the Leiria Region, assumes an intervention at the level of general care, which is guaranteed by a team with training in this area. They are not exclusive to pediatric palliative care, but their availability is total, acknowledged Judite Mussica.

"When I was hospitalized with my son, a nurse offered to sleep with Lúcio so that I could leave the hospital. They are gods who are there", she revealed.

"There is a sharing and a work of proximity and networking between the Leiria hospital and the Coimbra Pediatric Hospital", explained Margarida Henriques, mentioning that the two hospitals share "some patients, who are closely monitored by both teams".

The doctor added that, "if the patients are in a situation of greater complexity and require specialized care, the articulation between teams is activated, trying to minimize as much as possible the impact of the worsening of the child's life and that of his family".

"The added value of this valence is the proximity and the relationship that is established with the families, avoiding going to the emergency room, because we talk on the phone, we clarify doubts and a relationship of trust is established", she assumed.

The coordinator stressed that "this proximity does not only exist in the moments of worsening of the patient", but whenever the families need something.

"It is a green lane that can guide them."

Silvana's daughter died in April. Born in January, the child suffered from trisomy 18.

"They are very dedicated people. I can only thank the whole team for the care, the follow-up, the affection and everything they did for my daughter, for me and for the father. Whenever I needed them, they were there. The work they do is very beautiful", she confessed to Lusa, mentioning that psychological support was immediately made available.

The head of nursing, Margarida Marques, denied "that palliative care is the end of the line".

"There can be discharges. We have tried to demystify this myth among health professionals and the referral has increased", she revealed.

Adriana Azevedo also highlighted the "multidisciplinary team that works in an interdisciplinary way", where "everyone is part of the solution, including the family".

These cases have no cure, but there is also no estimate of life expectancy.

"Children are very unpredictable", acknowledged Regina Silva, a nurse in the Pediatric Special Care Unit, who confessed that there is no magic formula for dealing with the death of a child.

However, the team tries to prepare the family and help them say goodbye when death seems to be near.

The involvement of this group of professionals does not end with the end of the child's life. The family is accompanied in their mourning, in addition to the usual protocol.

"There are families who still visit us after several years", they say.

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