Baby born with Trisomy 18 taught
my family to fight heartache with love
By Amy Olson
May 3, 2006 | In this life we are given the option
to be a fighter and overcome challenges, or we can coward
away and be defeated by them. I believe everything happens
for a reason. It is important to understand that challenges
in our lives are meant to teach us and help us grow.
The unknown awaiting all of us is going to bring happiness
as well as sorrow. Whether or not we reach our full
potential is determined from our reactions to trials.
Even if they seem unfair and we do not understand their
purpose, we can always come out a better person if we
are humbled enough to learn from them.
As a simple, carefree 5-year-old, I learned this lesson
all too early. After having five children, my parents
announced they were expecting a baby once again. My
parents unconsciously assumed that 23 chromosomes
from each of them would combine to create a beautiful,
healthy baby with a total of 46 chromosomes. However,
after being pregnant for five months, an ultrasound
turned that assumption into worry and fear.
Following the discovery that the baby was a girl,
the ultrasound unfortunately discovered something else.
Some abnormalities in the baby's heart chambers were
detected. The doctor ran more tests to find out what
was wrong. The third test, a chromosome test, showed
it was obvious that there were 47 chromosomes instead
My sister was diagnosed as Trisomy
18, carrying a rare and fatal syndrome that there
is no prevention, treatment or cure for.
Trisomy 18 is the second most common trisomy. This
occurs in one in 5,000 babies and is three times more
likely to occur in females than males. Its frequency
is second to Trisomy 21, commonly known
as Down syndrome.
"No one knows the cause of it," said Dr. Michael Cosgrave,
a pediatrician from American Fork, Utah. "This type
of trisomy is not hereditary, and is not the result
from anything either parent did or did not do."
There is no scientific reasoning why this syndrome
occurs. It is simply an unpreventable error of a third
18th chromosome where there should only be two. Each
chromosome in the human body is important and holds
specific information needed for us to continue a strong
and healthy life. The problem is the extra genetic material
from the extra chromosome. This most commonly results
in stillbirths. Those who do make it to birth usually
live from a few moments to a few days. Less than 10
percent make it to their first birthday.
My mother, Bobette Olson, said, "Telling your children
their baby sister will not survive is something I wish
upon no one."
My parents gathered me, my sister and three brothers
in our family room. First they told us that our baby
was going to be a baby girl. Then they tried to explain
that she had an extra chromosome that would not let
her develop all the way before she was born. They told
us we had to cherish every moment with her because if
she was born alive, she would most likely only be with
us for a few hours. In my five years of life I had never
experienced death before. I did not understand what
it meant. The only thing I knew for sure was how exciting
it was that the baby was going to be a girl.
June 29, 1990, two weeks after her expected due date,
Dr. Cosgrave delivered Mary Elizabeth Olson. Since it
was uncertain of how much time we would have with her,
we were all extremely grateful to have her with us for
40 miraculous days. Mary chose to be a fighter. She
continually amazed all of us, including Dr. Cosgrave,
of her strength and will to survive. Unlike most Trisomy
18 babies, Mary was not dependent on machines to keep
her alive. Because the hospital had nothing to offer
her, we were able to take her home only three days after
she was born.
"We didn't look upon each day as another day closer
to losing Mary, but as another day of life to be appreciated
and enjoyed," said Bobette. "Each day was a celebration
with a focus on the strength and love Mary brought so
clearly to all our hearts."
Babies with Trisomy 18 have recognizable physical
defects. The severity and occurrence of these symptoms
are different in each baby. These defects can include
low birth weight, a small mouth and jaw, the index finger
overlapping the third finger with the fifth overlapping
the fourth finger, small fingernails and a short sternum.
To me Mary was flawless; she was beautiful. Her soft
olive skin, thick dark hair and her cute, little rosebud
lips were adorable. Her features were petite, yet perfect.
Measuring 17 inches and weighing 4 pounds 5 ounces,
Mary wore preemie diapers which drowned her and had
a hard time staying on. I remember holding her hands
and looking so closely at her tiny fingernails that
made mine look enormous.
Birth defects that are not physically noticeable are
heart defects, multiple joint
contractures, hearing loss, kidney abnormalities
aplasia. Also, their brains are not developed the
"Basic instincts like sucking, swallowing and breathing
can be very difficult for them," said Dr. Cosgrave.
"The neurons in their brain stay clustered inside instead
of leaving the brain to reach different parts of the
body to make these instincts work."
Mary passed away Aug. 8, 1990. I remember being scared,
standing behind my older sister and grabbing her leg
tightly as my family helplessly watched our dad try
to revive her. It was then and there when I finally
grasped the concept of death. It meant Mary wasn't ever
going to wake up again.
There is a chest in my parent's bedroom full of Mary's
things. When I open it, it still smells just how I remember
her smelling. I have written countless letters, thinking
that if I put them in that chest she will be able to
somehow read them.
"In her chest we have a wooly white lamb that sits
atop all of the material things that Mary needed which
reminds my family of the sacrifice and loss we all felt
the day she left us and every day since," said Bobette.
Two years later, Diane Hunsaker of Alpine, Utah, also
lost her child to Trisomy 18. Her daughter, Anne Nicole,
was only two weeks old when she passed away.
"I was depressed for a long time," Diane said. "It
was a struggle to get out of bed in the morning." She
said her nurse gave her Bobette's phone number in case
she wanted to talk to someone else who had gone through
the same experience. She said Bobette's example gave
her hope that she would also be able to get through
"At Anne Nicole's funeral many family and friends
told me they knew what I was going through and assured
me they would always be there for me," said Diane. "I
knew they would always be there for me, but it was frustrating
because I also knew they did not know how I felt." She
said simply talking with Bobette, who did know how she
felt, was comforting and therapeutic.
Another way to cope with losing a loved one to Trisomy
18 is by joining a physical or an online
support group. Support groups make it possible for
families and friends to share their stories, photos
and memories of their loss. It can be a place of comfort
for those in any stage or scenario. The support groups
are full of those who are expecting a baby diagnosed
as Trisomy 18, those who have experienced a stillbirth,
those who were at least able to spend some time with
their baby before it passed away, and also for those
who are fortunate enough to still be with their baby
but are preparing for their loss.
B.J. Hoff said, "...every life counts, no matter how
brief or gentle its whisper." My family has grown so
much from this experience. We could be bitter and still
be asking why this had to happen, but instead we have
become more united and grateful. She taught us to fight
the unknown with faith. She taught us to fight struggles
with goals. She taught us to fight sadness with joy.
She taught us to fight challenges with courage. Above
all, she taught us to fight heartache with love.