About
Claire...
Claire has truly changed our lives. Things we took for granted before,
now seem so important. She was diagnosed with full Trisomy
18 and wasn't expected to live full term, since T18 is 'incompatible
with life'. We were told that we (most likely) wouldn't be bringing
her home - we grieved. We wanted to meet her. When we realized she
would be born on her due date, we were scared and excited. She wasn't
expected to live through childbirth and to complicate matters more,
she was breech. We bought some preemie clothes and prepared for her
birth and death. Once she was born, she wasn't breathing and had no
heartbeat. She was revived instantly, and Christened. She wasn't expected
to live for long, only minutes, maybe hours, if we were truly lucky.
We thought she would be in the hospital for the duration of her short
life. Then, after 48 hours in the hospital, we decided to take her
home to keep her comfortable. She was 'failing to thrive', and wasn't
expected to live more than two more days. Statistics show that 50%
of all T18 babies born do not survive past the first week. Only 10%
survive to see their first birthday... and, according to our doctors,
continuation of a pregnancy with this diagnosis is uncommon.
No one can predict her future, not even doctors. We don't know how
long we will have with our baby Claire, and we are blessed with each
day we are given to enjoy her. We took for granted having healthy
babies and believing they would outlive us, now we know that isn't
a guarantee.
Here is the story of our little miracle, Baby
Claire.
This website was initially designed to help family and friends keep
up with Claire and her family during what was projected to be a short
life. Now it is dedicated to sharing the life of baby Claire, who
was diagnosed in utero with trisomy 18 and continues to become and
excellent source for those who wonder what life could be like if their
baby with trisomy 18 survives.