Personalized support of parents of extremely preterm infants before, during and after birth


Personalized support of parents of extremely preterm infants before, during and after birth


Haward MF; Luu TM; Pearce R; Janvier A


Seminars in Fetal and Neonatal Medicine




Communication; Family Integrated Care; Parent; Peer-peer support; Personalization; Prematurity


The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person’s characteristics, preferences, and values. Laurence did not expect this. He life used to be perfect: just married, new baby, happy family. Then it happened. Her membranes ruptured and here she was, being told she was in labor at 23 weeks. She was lost when she met the neonatologist; she felt that all she heard were the bad things that could happen to her baby including terrifying statistics about death and disability. This was horribly shocking, and nothing made sense in her mind. She kept thinking was “how did this happen?” Why did her body fail? It must have been her fault… she should have slept more and eaten better or maybe she was just too old… Or maybe it was the doctor’s fault for not listening to her when she had cramps 2 weeks earlier? Her husband kept telling her they would be OK, but she could not be positive. He was the optimistic one in the couple, he seemed to cope much better than her. He was in action mode, organizing child care for the other two children, but she felt paralyzed. This was not like her. What was going to happen to her, her marriage, her child, her dreams? How could she let all this happen? What could she had done to prevent this? In another part of the hospital, Clyde was born in the early morning hours. He had come into this world too early but somehow made it through the delivery despite Mel being told he might not. Mel didn’t really understand what had happened. They had given her some materials to read but the words were complicated to understand, the pictures were scary, and she could not concentrate. She was used to deal with difficulties, but not this one. She had been in foster homes since she was a child, then she lived on her own for a year. She turned 18 last week and has lived in a domestic violence shelter for the past 20 days. Clyde was attached to machines to help him breathe. He had wires all over his little body and alarms kept beeping while nurses did not seem to notice. Mel was afraid to get in the way of all the people at his bedside. She didn’t know what was happening and was embarrassed to ask. She felt like an intruder in her son’s room. When she had tried to touch Clyde, she was told: “He is sleeping, he needs to stay calm”. She was asked later if she wanted to hold him, but she was scared. What if she dropped him? What would she do, where would they go if he survived?


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Citation List Month

June 2022 List



Haward MF; Luu TM; Pearce R; Janvier A, “Personalized support of parents of extremely preterm infants before, during and after birth,” Pediatric Palliative Care Library, accessed August 8, 2022,

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