RESOURCES
Expecting A Child
What Shall We Do Now?
For parents of infants newly diagnosed with Trisomy 18 or 13 The Need for Information at Diagnosis For parents facing decision-making following a prenatal diagnosis or diagnosis following the birth...
TRIS Project – Trisomy 18
Giving a Face to Trisomy 18: Debbie Elaborates on this Rare Condition Ava, Akaiya, and Annabelle, three little girls with full trisomy 18. The terms “incompatible with life” and “lethal anomaly” are...
TRIS Project – Trisomy 13
What is Trisomy 13? It is difficult to find the accurate prevalence data about trisomy 13 (t13). Some studies look to hospital registries while others focus on infants born in a specific state or...
TRIS Project – Rare, Rare Disorder
What is a “Rare Rare” Genetic Condition? It is interesting to note the prevalence of conditions such as trisomy 18, 13 and 9 vary between one in 5000 to 9000. This translates to a low incidence and,...
TRIS Project
Trisomy 13, Trisomy 18 and related disorders ~ The TRIS Project ~ Tracking Rare Incidence Syndromes The TRIS project provides a means to change perceptions about children with rare trisomy...
Ethical Rounds: An Infant with T18 & VSD
PROFESSIONAL VIEWPOINT: JOURNAL CLUB Reprinted from the SOFT Times, May/Jun/Jul 2011. Janvier A, Okah F, Farlow B, Lantos JD. 2011. Ethical Rounds: An infant with trisomy 18 and a ventricular...
Palliative and Hospice Care
A brief description of Pediatric Palliative Care, Perinatal Palliative Care and Pediatric Hospice Care Pediatric Palliative Care Palliative Care is often recommended for newborns with trisomy 18 or...
Medicaid Waiver, SCHIP, SSI
Medicaid Waiver, SCHIP, SSI, Katie Beckett, TEFRA, etc. Medicaid Waivers Waivers are programs that states can use to test new or existing ways to deliver and pay for health care services in Medicaid...
