Please keep in mind that while it's important to
know the facts, no statistic knows YOUR child. Your child's
story is still unfolding. We believe that each child, no
matter how long his or her lifespan, matters, and changes
the world and the people in it in a positive way. The love
you feel for your child will last a lifetime, no matter if
you have 5 minutes, 5 days, 5 months, or 5 years, or even
longer with your child. We work toward the day that more of
these precious children can grow into adulthood.
Trisomy 18 (T18), also know as Edward's Syndrome, is a
genetic disorder caused by an extra (third) copy or partial
copy of the 18th chromosome, instead of the usual two
copies. It was named after John H. Edwards who first
described it in 1960. "Full Trisomy 18" describes a person
with a full extra copy of the 18th chromosome and occurs in
most cases of Trisomy 18.
(Note: In in a small percentage of cases, only some of the
body's cells contain an extra copy of chromosome 18. This is
called mosaic Trisomy 18. Very rarely, a piece of chromosome
18 because attached to another chormosome (translocated).
These cases results in less severe symptoms and
developmental delays.)
Trisomy 18 is the most common Trisomy after Down Syndrome.
It occurs in approximately one in 3,000 pregnancies. 50-95%
of those diagnosed with Trisomy 18 in utero do not survive
to birth. There is no known cause of Trisomy 18. Although
women of any age can give birth to a baby with Trisomy 18,
as with most genetic conditions, there is an increased risk
as a women ages.
Trisomy 18 is three time more common in girls than in boys.
Of the children that make it to birth, the average lifespan
is about 10 days. About 5-10% of the children that make it
to birth survive to their first birthday, and a small number
of these live many years and even decades, with the oldest
known person living to their late twenties.
People with Trisomy 18 cannot live on their own, have
significant developmental delays, and most need intensive
medical support.
