Žan Pajk
Klinični oddelek za neonatologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Iva Kramar
Klinični oddelek za neonatologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Vanja Uran
Klinični oddelek za neonatologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Janja Gržinić
Klinični oddelek za neonatologijo, Pediatrična Klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Aneta Soltirovska Šalamon
Klinični oddelek za neonatologijo Pediatrična Klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Abstract

Providing specialised care for newborns requires intensive care and specialised knowledge across various fields of neonatology. This care focuses not only on the pathophysiological processes affecting newborns but also on rare congenital disorders that impact the structural or functional development of tissues, organs, and organ systems. Neonatal health-care for rare diseases is therefore highly individualised, emphasising early detection and adaptation to the specific needs of the child. Continued healthcare involves providing comprehensive support to the parents of sick newborns, including empowering them, educating them, and encouraging active involvement in the care of their child. Additionally, it includes support to help the family adjust to life with a sick child in the home environment.

Key words: newborn, specialised nursing care, rare disease, parents