As of September 15, 2009, 153
Full TRIS Surveys were completed (children living longer
than two months). Of the total, 50 children had a trisomy 18
variant (32.7%) including 34 full, nine mosaic, five
partial, one tetrasomy and one isochromosome 18p. At the
time of survey completion, 37 children were living (74%)
(mean = 106 months, range two to 394 months). The remaining
13 survived between two to 258 months (mean = 64 months)
(32%).
Of the 124 completed Modified TRIS Surveys, 23% represented
infants with trisomy 13 (n =28; all full). Eighteen (64.3%)
were stillborn or passed away on the day of birth. The
majority of the remaining infants survived for approximately
30 days or less (n = 8, range = 1 to 33).
Data representing 26 children or adults with a form of
trisomy 9 is available on the TRIS Survey (n=153, 17%). This
group represented nine individuals with trisomy 9 mosaic, 11
partial, and six with trisomy 9p only. In addition, five
individuals with partial trisomy 9 also had an affected p
arm. All are living with a range two to 468 months of age
(mean=90 months). Only one infant with trisomy 9 mosaic is
represented in the Modified Survey (n=124). The child passed
away on the day of his birth in 1996.
RESOURCE SECTION:
About TRIS: The Tracking Rare Incidence Syndromes (TRIS)
project seeks to increase awareness and knowledge for
families and professionals touched by rare trisomy
conditions and aims to facilitate improved decision making
for optimal services and supports for children and their
families.
The website includes survival data of children with Trisomy
18 based on user surveys. You can complete a survey here
about your child and learn about survey results.
http://web.coehs.siu.edu/Grants/TRIS/index.html
Article References:
Bruns, D. A. (in press). Neonatal experiences for newborns
with full trisomy 18. Advances in Neonatal Care.
Bruns, D. A. (2008). Pregnancy and birth history of newborns
with Trisomy 18 or 13: A pilot study. American Journal of
Medical Genetics Part A, 146A(3), 321-326.
Bruns, D. A. (2006). Tracking rare incidence syndromes (TRIS)
project. American Journal of Medical Genetics Part A,
140A(22), 2510.