Resources for families

Supporting Premature Babies: How the F-Words Are Changing Neonatal Care? What if we looked beyond the diagnosis? Supporting premature babies in neonatal intensive care units (NICUs) often centers around risks: brain bleeds, chronic lung disease, developmental delays. But what if we changed the focus? What if, instead of only naming diagnoses, we talked about what […]

How “Small Wins” in the NICU Help Parents Cope With Their Baby’s Hospitalization? A Breath of Optimism in Neonatal Intensive Care Every year, thousands of parents endure the emotional roller coaster of having a baby in the neonatal intensive care unit (NICU). Amid medical procedures and uncertain prognoses, one crucial element is often missing: optimism.

The Kidney and Cardiovascular Health of Young Adults Born Prematurely: Insights from the HAPI Study I am always impressed by the resilience of premature babies who grow up to become active and healthy young adults. But what about their long-term health? This is an important question, and it is precisely what the HAPI study (Health

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