Resources for families

NICU Language, Everyday Ethics, and Giving Better News: Optimizing Discussions about Disability with Families  The Neonatal Intensive Care Unit (NICU) is a special place with its own language and culture. For doctors and nurses, it’s a place where they pay close attention to every little detail and try to stay hopeful. But for parents, it […]

Parental perspectives after very preterm birth: Seeing the good, not just the bad  The study aimed to understand how parents see the health and development of their extremely preterm baby (born at less then 29 weeks gestation): their concerns and what they considered positive. We compared this with their babies level of neurodevelopmental impairment (NDI).

Whole genome sequencing in neonatology: what is it’s value? Rapid whole genome sequencing and whole exome sequencing, also known as “next generation sequencing” (NGS), are increasingly recommended as the first test to diagnose infants suspected of having single gene disorders. However, the effectiveness of NGS in diagnosing or managing these conditions varies widely depending on

Parental evaluate the health of their children and give their perspective on important health outcomes after extremely preterm infants This study looked at how parents of premature babies feel about their children’s health and development. We asked parents of children born extremely preterm (less than 29 weeks of gestational age) to rate their child’s health