[... because We Should not Forget! Neonatal Organ Donation]. / ... denn wir dürfen sie nicht vergessen! Organspende in der Neonatologie.

Obwohl sich fast 40% aller Todesfälle im Kindes- und Jugendalter während der Neugeborenenperiode ereignen, kommt es in der Neonatologie nur selten zur Organspende. Wir berichten über ein Neugeborenes, bei dem nach perinataler Asphyxie der endgültige, nicht behebbare Ausfall der Gesamtfunktion des Großhirns, des Kleinhirns und des Hirnstamms ("Hirntod") gemäß Transplantationsgesetz diagnostiziert wurde. Das Herz wurde nach der sogenannten zweiten richtliniengemäßen "Hirntoddiagnostik" zur Organspende entnommen und erfolgreich transplantiert. Besondere juristische Herausforderungen ergaben sich aus dem Umstand der anonymen Geburt, den notwendigen Regelungen der Vormundschaft sowie der Zuordnung des Totenfürsorgerechts. Medizinisch standen die speziellen Regelungen der Diagnostik des irreversiblen Hirnfunktionsausfalls bei Neugeborenen und der optimale Erhalt der Organfunktion vor Entnahme im Vordergrund. Für die Pflegenden stellte sich der Ablauf grundlegend anders dar als bei einer Therapiezieländerung mit anschließender palliativen Versorgung in Anwesenheit der Eltern. Angesichts der großen emotionalen Herausforderungen erwiesen sich die Einbindung aller Beteiligten in die Entscheidungsabläufe und die Übernahme der besonderen Verantwortung als hilfreich.Although almost 40% of all deaths prior to 18 years of age occur within the neonatal period, organ donation is rare in neonatology. Herein we report about a newborn infant with perinatal asphyxia and permanent, irreversible loss of brain function (cerebrum, cerebellum and brain stem), managed according to the criteria and instructions defined by the German law of donor organ transplantation. After confirmation of irreversible loss of brain function, the heart was successfully transplanted. Specific legal challenges resulted from the instance of an anonymous birth, the guardianship required, and the specific regulations of welfare of the deceased individual. The most prominent medical challenges consisted in the specific regulatory purposes for the diagnosis of the irreversible loss of brain function in neonates and the optimal maintenance of organ functions prior to donation. From the nursing point of view, the proceeding differed entirely compared to redirection of care into palliation while parents are present. Involving all stakeholders in every step of decision making was regarded as emotionally helpful.

Extending the Concept of Advance Care Planning to the Perinatal Period.

Easier access to prenatal diagnostic procedures led to its widespread use as a screening measure. Hence, today it is more common for life-limiting illnesses to be diagnosed during fetal life. The concept of Advance Care Planning (ACP) provides a framework for caregivers, families and their multidisciplinary teams to anticipate and plan ahead for potential future medical decisions so that the affected children are reliably treated according to their parents' individual values and wishes. In the perinatal context, ACP also has the potential to tackle the needs of unborn or newborn children with life-limiting illnesses and their families better, avoid unnecessary and burdensome measures and focus upon goals that are valuable and meaningful to both child and family.

Palliative Care in the Delivery Room: Challenges and Recommendations.

Palliative care in the delivery room is an interprofessional and interdisciplinary challenge addressing the dying newborn and parents as well as the caregivers. It differs in some significant aspects from palliative care in the neonatal intensive care unit. Clinical experience suggests that many details regarding this unique specialized palliative care environment are not well known, which may result in some degree of insecurity and emotional distress for health care providers. This article presents basic background information regarding the provision of palliative care to newborns within the delivery room. It offers orientation along with a preliminary set of practical recommendations regarding the following central issues: (i) the basic elements of perinatal palliative care, (ii) the range of non-pharmacological and pharmacological interventions available for infant symptom control near the end of life, (iii) meeting the personal psychological, emotional, and spiritual needs of the parents, and (iv) care and self-care for medical personnel.

Psychosocial Support within the Context of Perinatal Palliative Care: The "SORROWFUL" Model.

Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources.