Caring for Infants with Trisomy 13 - Patau Syndrome from the National Institute of Child Health and Human Development

Caring for Infants with
Trisomy 13 or Trisomy 18
National Institute of Child Health and Human Development




Researchers also found that the timing of the diagnosis impacted the infant’s treatment plan. Physicians and families elected to limit intensive care in the delivery room in more than 90% of births when T13 or T18 was confirmed prenatally. Comparatively, in cases where the T13 or T18 was diagnosed after birth, more than 90% of infants initially received full intensive care in the delivery room.
www.nichd.nih.gov/research/science-advances/Pages/infant-care-trisomy1318.aspx

SOFT Support Organization for Trisomy 18, Trisomy 13 and Related Disorders
35 years of Support Resources
www.Trisomy.org 
Trisomy 13 LIFE - Patau Syndrome Family & Professional Support Group
FB Page       www.facebook.com/Trisomy13LIFE
FB Group     www.facebook.com/groups/Trisomy13

The Experience of Families With Children With Trisomy 13 and 18 in Social Networks- Full Article

Article - The Experience of Families with Children with Trisomy 13 and 18 in Social Networks 

Annie Janvier, MD, PhD, 

Barbara Farlow, BEng, MBA, and 

Benjamin S. Wilfond, MD

CONCLUSIONS: Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.