The Norwegian Health Directorate which has previously been commissioned to draw up national guidelines and recommendations for palliative treatment of children with life limiting illnesses, from the neonatal period and throughout childhood. The guidelines is to be published in the third quarter of 2013.
However, the original mandate does not include cases where women choose to complete a pregnancy despite the mounting evidence of serious conditions that indicate the child will have a very limited life expectancy after birth.
Many pregnant women undergoing ultrasound in early pregnancy, either through the public or private services. Early ultrasounds can detect two very rare chromosomal disorder with severe mental retardation (Trisomy 13 and 18). Many foetuses with these two conditions die in-utero, a number of women will seek an abortion but some women choose to give birth to these children. Other malformations incompatible with life after birth, or that are sure to lead to early death, can be detected by ultrasound, and therefore be known before birth.
Palliative care for children with limited life expectancy is very important for the small group of parents and children who are affected. The need is highlighted in the debate about early ultrasound and palliative care should be on offer to support women and couples who want to deliver a child with limited life expectancy at full term as well as to the health professionals who work with these patients.
“The Health Directorate has been commissioned to expand the national guidelines for palliative care for children to include children born with very limited life expectancy due to conditions that are uncovered in the course of pregnancy,” said Health and Human Services, Jonas Gahr Støre.
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