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 of 46.

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 congenital heart defects, multiple joint contractures, hearing loss, kidney abnormalities and radial aplasia. Also, their brains are not developed the right way.

"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 her struggle.

"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.

SK
MS