How we handled our son's birth at the limits of viability after an unexpected pregnancy.

In this paper, Dirk-Jan and Hiske, the parents of an infant born at 24 weeks of gestation, provide an insight into their experiences of their sons's birth and making decisions at the limit of viability. They were faced with the risk of an extremely premature birth at 22 weeks of gestation. The delivery miraculously stalled, and the limit of viability moved closer. The couple received prenatal counselling about the treatment options after birth, which were initiating intensive care treatment or comfort care. Together with physicians, they made the decision to initiate intensive care treatment if the infant was born in the grey zone. Different values were considered important in their lives during the decision-making process.

A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth.

AIM: To describe what is known in the literature about parental perspectives in making prenatal decisions regarding treatment after birth at the limit of viability, as a better understanding of parental values can help professionals support parents as they decide. METHODS: PubMed, Cochrane, Embase, CINAHL, PsycINFO and Web of Science were searched to identify relevant literature from 1 January 2010 to 22 April 2022 on parental decision making. Data were extracted from selected studies and organised into themes. The final themes were formed through collaboration with the parents of a premature infant born at 24 weeks. RESULTS: Of the 15,159 papers examined, 17 were included. Parental perspectives were described in terms of long-term outcomes for the infant, survival, protection against the burden of neonatal treatment, long-term impact on the family, religion and spiritual beliefs, to do everything possible, hope, sense of responsibility, wanting the best, doing what is right, giving a chance and the influence of experience. CONCLUSION: The extracted parental perspectives show the complexity of these decisions. Some perspectives were clear, but others were multi-interpretable. Increasing the understanding of common parental perspectives can help improve shared prenatal decisions and lead to further improvement and personalisation of the process.