Please see below for a variety of information on health issues for children with T13, T18 and related disorders.
Parents and carers of children with Trisomy 13 or Trisomy 18 often have similar concerns about their child's health and the best way to manage their child's healthcare needs.
The Paediatric Pain Profile (PPP) is a behaviour rating scale for assessing pain in children with severe physical and learning impairments.
There are tests to determine the extent of a heart defect, and these will include a physical examination and possibly blood and urine tests. After reviewing the examinations and tests the heart specialist (cardiologist) will make recommendations about possible treatment and may want to see the child at regular intervals.
If you are caring for a child with Exceptional Health Needs in Scotland, please check out this article for useful resources.
Visit the SOFT USA website and you can download a copy of the revised 2012 publication by Ann M. Barnes and Dr John C. Carey Common Problems of Babies with Trisomy 18 or Trisomy 13.
From the SOFT USA homepage you can also download a copy of Care of the Infant and Child with Trisomy 18 or Trisomy 13 (Barnes and Carey, 2014). An invaluable resources for all families.