Abstract
Background: Trisomy 18 is the second most common autosomal trisomy in liveborn infants, characterised by severe psychomotor and growth retardation.
The median survival is 19 days, with only 5-8% surviving their first year of life. Despite recognising that trisomy 18 is almost invariably associated with death in infancy or early childhood, there is a dearth of published data regarding the palliative care needs of these patients.
It is estimated that there are 20 -25 new cases of trisomy 18 in Ireland annually, although the lack of a national database makes it difficult to confirm incidence rates.
Aims: To assess the referral rate of trisomy 18 to a Palliative Care service, review symptom burden and outcomes in terms of life expectancy & place of death.
Methods: A retrospective chart review of all cases referred over a ten-year period (2001-2010).
Results: 20 referrals were made. All had classical physical characteristics of trisomy 18. The most common reasons for referral were feeding & breathing difficulties, irritability and assistance with discharge planning. Mean age at death was 64 days.
Discussion: This is the first study to review the specific palliative care needs of infants born with trisomy 18, to show that successful home discharge is possible & to comment on place of death.
A national database is needed to identify infants diagnosed with trisomy 18, & to ensure correct resource allocation.
Neonatal pathways for babies with trisomy 18 could provide a framework for decision making & care planning, from diagnosis to bereavement support.
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Hannon, B., Jennings, V., Nolloy, E. et al. Trisomy 18: Referrals to a Children's Palliative Care Service. Pediatr Res 70 (Suppl 5), 411 (2011). https://doi.org/10.1038/pr.2011.636
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DOI: https://doi.org/10.1038/pr.2011.636