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
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 ń 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
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
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 alive.
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
Our precious gem, a jewel of the Lord
52 minutes in
our arms, forever in our hearts
Terry and Courtney firstname.lastname@example.org
Please visit her web-site at:
Adopt a Bear for a family diagnosed with
Trisomy 13 - 18
Newly diagnosed with a t13 child? We'd love to send you a Bear.
As most of you know, our daughter,
Gemma was born and died on Sept 8, 2005. She was diagnosed in utero at 18
weeks gestation with Trisomy 13 - A condition that is thought by most to be
“incompatible with life.” After receiving this devastating diagnosis and
feeling as though the medical community was not on our side, a small package
arrived in the mail, which was addressed to our daughter. Upon receiving
this, we were reassured that our daughter is indeed a “Child of God” and a
life worth fighting for. I still hold that gift close to my heart and
somehow it lessens the pain, knowing our precious baby girl touched it with
her sweet little face, before leaving us to go play with the angels.
Because of the profound impact that this small gift had during such a
difficult time, we have begun, “Gemma’s Bears." Gemma’s Bears are intended
to be a gift of love for babies and families who have been given the
difficult diagnosis of Trisomy 13 or 18, both of which are considered by
most doctors to be fatal, although some babies can and do survive. It is
our hope that through these gifts of love, the parents of these special
children will remember that their child, is indeed a precious “Child of God”
and that if their child leaves this world and is called to their heavenly
home, this bear will bring comfort to the grieving parents. We ask that you
please support us in this endeavor by adopting a bear for a family faced
with this news. The total cost of each bear, including shipping, is $25.
However, donations of any amount are greatly appreciated. A card will be
included with the bear with the name of the donor or in remembrance of a
loved one. Please indicate if you wish to be anonymous. All donations are
To send a
donation by mail, make checks out to:
Hope For Trisomy 13 and 18
14850 Fripp Island Court
Naples, FL 34119
Please add a memo that you are sponsoring a bear.
Thank you once again for your continued prayers,
love, and support. It is through your prayers we have received the strength
to love, and the will to carry on. Thank you for sharing with us in this
journey. May the love of Christ be with you.
Courtney and Terry, the parents of a Saint