The article by Dr Pierre Bétrémieux opens with a comprehensive outline of perinatal palliative care. According to Dr Pierre perinatal palliative care concerns newborn children affected by a life-threatening condition, the extremely premature newborn babies for whom technical care is impossible (or not wished before 24 or 25 weeks’ gestation), the newborn children admitted to intensive care units whose severe conditions are incompatible with life and children who will die from an incurable condition and those who will die because it is decided to withdraw or withhold some treatments.
Dr Pierre who is Honorary Consultant at Rennes Teaching Hospital in France says “palliative care aims to respect the newborn child by valuing his/her lifetime regardless of weight, term, appearance or pathology.” He continued to explain that the palliative care approach aims to contribute to the emotional impact of the birth of the child by valuing the babies meeting with parents and other family members. It also aims to facilitate the attachment, the memories and later the bereavement of the parents, siblings and more distant family members.
“At the birth, the parents hope and long to be able to bond as a matter of urgency with the newborn child. To meet the baby alive, to hold the living child in their arms, to name him, to speak to him, to present him alive to close friends and family is a genuine desire,” says Dr Pierre. The parent’s desire is often unfulfilled because most of these children live very short lives, some dying within two hours. Many of them don’t get to meet friends and family because of the rules of the obstetric theatre and it being closed to the outside.
“The doctors suggested palliative care; we wanted to take no responsibility, we decided to follow their opinion because it was too difficult to understand. We had no notion of time, we thought in weeks without trying to look beyond that. We were able to live day by day without asking ourselves endless questions. We are proud of her, we are proud of us. We have no regrets,” said a 24 year old mother, whose 22 week baby girl was found to have a severe and inoperable heart disorder.
According to the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) priority is given to the child meeting his/her parents. Based on these principles new requirements are being implemented for the organisation of the birth room and perinatal care unit. To read the full article, click here.