articles and research

Parental perspectives after very preterm birth: Seeing the good, not just the bad 

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). […]

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Whole genome sequencing in neonatology: what is it’s value?

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

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Parental evaluate the health of their children and give their perspective on important health outcomes after extremely preterm infants 

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

Parental evaluate the health of their children and give their perspective on important health outcomes after extremely preterm infants  Read More »

Decision-making for extremely preterm infants with severe hemorrhages on head ultrasound: Science, values, and communication skills

This article, authored by Marie Chevalier (a former fellow of our unit) with Thuy Mai Luu (in neonatal care), Paige Church (a rehabilitation and neonatal care physician), Annie Janvier, and Keith Barrington, reviews the medical literature regarding the outcomes of preterm infants with significant cerebral bleeding and the variations in practices among different teams or countries.

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Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity

Congratulations to our whole “voice of parent’s” family. Our last article the impact of prematurity on parents. They describe both positive and negative outcomes (while in the traditional medical literature only negative outcomes are described). The positive impacts reported included: an improved outlook on life, such as gratitude and perspective, stronger family relationships and the gift of the child.

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Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity

Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity Congratulations to Camille, an amazing researcher (and person) who adds another article to her collection of HAPI papers (Health of Adults born Preterm Investigation). Adults born preterm evaluated their health in a balanced fashion. Preterm-born adults often feel that they have experienced positive transformations as

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Family Integrated Care: Clinicians and Families’ perspectives

Family Integrated Care: Clinicians and Families’ perspectives This is an article written on behalf of our PAF (partenariat famille) team. “The philosophy of care in Neonatal Intensive care Units (NICU) has changed with increasing integration of families. We examined parents’ and clinicians’ perspective about Family Integrated Care (FiCare) in our quaternary NICU. We found that

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