Newborns with complex diseases, how palliative care works – breaking latest news

Perinatal palliative care accompanies the pregnant woman with a fetus affected by serious pathologies and the newborn. The spectrum of diagnoses is broad and includes neurological, metabolic, muscular, cardiological, respiratory, malformation, chromosomal, oncological pathologies. The child’s life expectancy can be very short or several years. Also in this case always at risk and in need of complex assistance, which up to the age of 18 is provided by the pediatric palliative care team.

Taking charge

Perinatal care aimed at the whole family nucleus. Through a prenatal counseling process, the team (gynecologist, neonatologist, obstetrician, psychologist, nurses and pathology specialists) plans the management of the fetus in utero, birth, possible hospitalization in the neonatal intensive care unit, discharge to home or hospice explains Marcello Orzalesisecretary of the study group in perinatal palliative care of the Italian Society of Neonatology.

The birth centers of our country that have activated the program starting from the prenatal phase they are still very few, concentrated in the central-northern regions. To check the status of implementation of the service in August we started a fact-finding survey of 110 Italian Neonatology facilities and to cover the organizational gap we will develop guidelines on the methods of delivery says Orzalesi.

The goal is to offer not only an alternative to abortion but also the possibility of avoiding intensive treatments on the newborn, accompanying him to death without pain. All neonatal intensive care units in the country are equipped to provide postnatal palliative care. The real challenge – he points out – is to ensure that the gynecologist sends the cases already in the prenatal period to a multidisciplinary team to build a shared treatment path with the family that gives the mother and child as much quality of life as possible.

The meeting with the couple

Early management makes all the difference. After prenatal diagnosis we meet the couple, to whom we describe the consequences and prognosis of the disease and, as an alternative to unnecessarily aggressive interventions, we propose the most suitable path and respectful of his dignity,” he clarifies Clare Locatelli, head of perinatal palliative care at the Sant’Orsola hospital in Bologna—. The number of meetings to define varies: 4-5 interviews are held, in correspondence with the check-ups. Grandparents and other figures may be involved when there are divergent positions, to avoid conflicts and resolve doubts.

Prepare mom and dad

Preparing the couple for possible scenarios before the birth is essential. Parents accept what will happen with less difficulty, create a bond of trust with the team and make more informed and appropriate choices for their child underlines Locatelli. In the Sant’Orsola obstetrics clinic there is a room where parents, siblings, grandparents and friends can greet and cuddle the newborn. Every moment of its existence must be accurate – tells -. We suggest preparing a briefcase with overalls, blanket and everything you need. The aim is to allow him to eat, be warmed up, held in one’s arms, rocked. To give value to the present and keep that memory in memory. Many requests for perinatal palliative care come from outside the region.

The same at the Gemelli polyclinic in Rome, where the service has existed since 2015. We assist a hundred couples a year. Half decides to keep the child at the first interview4 out of 10 per second, in the rest terminates the pregnancy — says the director Joseph Noia —. Before giving birth, we make an appointment in day hospital every 3 weeks. During pregnancy, analgesic palliation techniques can be performed, aspirating the pathological liquids from the fetus to avoid suffering.

The return home

As soon as conditions permit, the child is sent home with a personalized care plan. The team, in the presence of economic and housing difficulties, provides the social worker specifies Locatelli. Where it exists, the homecoming preceded by a 2-3 day stay in the children’s hospice. Here the family becomes familiar with the special needs of the child, learns to wash him, to move him, to place him in the cot, to use the principals correctly and administer the medicines – he explains Franca Benini, head of the pediatric hospice of the Padua Polyclinic —. If there is no hospice, the little one is normally kept in intensive care for several days, an unsuitable place.