In January of 2005, our
family moved across the state. At that time our children
were 1, 2 and 4 years old, and to our surprise, weeks
after the move, we quickly found out that we were expecting
our sixth child, two of which are in Heaven, due to
miscarriage. We were filled with both excitement and
fear at the same time because our most recent loss had
only four months prior.
We made it through the first trimester with very few
concerns. Unfortunately, at 17 weeks gestation, our
world quickly changed at what was supposed to be a routine
OB visit. I had gone by myself, because we were not
expecting to have an ultrasound. While looking for the
gender of our baby, the sonographer announced that there
were some abnormalities, some of which were indicators
of a chromosomal disorder. Our doctor then referred
us to a high risk specialist for a Level II ultrasound.
The one good thing that came from that doctor's appointment
was the sealed envelope sitting in the bottom of my
purse, reading "95% girl". We knew that I was carrying
a little princess and wanted to do everything we could
to honor and protect her life.
The following week we met with the Maternal Fetal Specialist.
The ultrasound indicated "numerous markers" of a chromosomal
abnormality ñ a severe heart condition: hypoplastic
left heart, enlarged kidneys, rocker bottom feet, and
the list went on. Once the APF results came back normal
for Down's Syndrome and Trisomy 18, we decided to go
ahead with the amnio, in order to help us rule out Trisomy
18 and 13 so that we could hopefully just focus on her
heart and other medical conditions. The amnio was done
on Friday the 13'th in May of 2005. The Amnio confirmed
Full Trisomy 13 which is almost always "incompatible
with life" according to the doctors. We knew however,
that 5-10% of these precious babies survive their first
year and some live many years and are such blessings
to their families and those whose lives they touch.
We continued to hang on to the hope that Gemma would
be one of these special babies. Although, our primary
hope all along was for Gemma to be born alive and baptized,
as we were given an 80-90% probability of Gemma being
stillborn between weeks 20-30. We prayed for a miracle.
As time went on the high risk doctors continued to find
more problems with her major organs. They found her
heart defect to be very severe, fluid and cysts in her
brain, enlarged cystic kidneys, and an omphalocele (her
intestines formed outside her body). We called numerous
doctors from various hospitals and the answers were
all the same, they couldn't correct her various problems
with her heart condition and they couldn't perform heart
surgery unless she was stable, which wasn't possible
with her other conditions.
Due to the response from the various neonatologists
and Obstetricians in distant towns, we decided to love
our little girl for as long as God would allow and not
to attempt to aggressively treat her. Because of the
size of Gemma's kidneys and omphalocele, there was risk
of rupture and we, along with the doctors, felt that
having a C-section was Gemma's safest bet for a life
We choose Sept, 8, to be Gemma's birthday, which is
also the day in which the Catholic Church celebrates
the Blessed Mother's Birthday. We feel extremely blessed
to have had such a special day for our daughter's birth.
She was born at 35 weeks and 1 day, because we, along
with the doctors felt that her days inside me were numbered
and that this was the best chance of Gemma being born
Our precious Gem was born at 12:38 P.M. and lived for
52 amazing minutes. She weighted 5 lbs, 6 oz's and was
16 O inches long. She was held by family and friends
and knew only love. We believe that Mother Mary now
holds our little Gemma in her loving arms and we now
have a little Saint in Heaven to pray for us.
Although our time with her was short, our lives will
never be the same. We are only beginning to comprehend
how such a little being can have such a profound impact
on our lives and the lives of others. Our little Gemma
has taught us how to love deeper, experience gratitude
and treasure all of the gifts we have been given, especially
the precious minutes we had together with our little
Gem in our arms and the 8 1/2 months we had with her
living inside me. God is good. He knows our hearts desires
and He does answer prayers. May God bless you in your
journey. Please feel free to contact us, we have copies
of various birth plans we had worked on along with pictures
of her omphalocele that we would be happy to share if
you think they could help.
Terry and Courtney firstname.lastname@example.org
to trisomy 13 Stories
You can read more about Trisomy
13 and receive incredible on-line support through the
private message board on www.livingwithtrisomy13.org.
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.