Her Diagnosis Doesn’t Define Her

Becoming a parent is a sobering thing. You’re completely responsible for making sure a new little person has everything they need to thrive, grow and learn.

Knowing that little person has something that will make her “different” makes you worry about her having friends, going to school, getting picked on or left out. Knowing that little one will have medical challenges — such as a heart defect — makes your own heart hurt in a way that only parents who’ve been there can truly understand.

With nearly four months remaining in our pregnancy, we learned that the baby we were expecting had a heart defect that would require open-heart surgery. That led to a diagnosis of Down syndrome. It was a harsh reality to us in those months. We were angry, hurt, scared, and so much more.

But now, five surgeries and countless doctor and therapy visits later, we feel blessed. Although our journey with sweet Lila has not been “typical,” or easy, it has been filled with purpose. We can face our journey with strength and courage and determination. Lila does it that way — with every step, every therapy session, every exercise, every challenge to work a little harder. And we are all rewarded when she accomplishes something some parents may take for granted — drinking from a bottle, a straw and now a regular cup; or learning to feed herself, sit up, crawl and now to walk and run.

Lila’s diagnosis doesn’t define her, and we won’t let it limit her, either. We might have to fight a little harder to make sure others don’t limit her, but we know she’s giving it her all, so we will, too.

Depending on the source, as many as 85 percent or more of babies pre-diagnosed with Down syndrome are terminated. That is an incredibly personal decision, but one I believe should be made with accurate information and resources. Thanks to our incredible genetics counselor, we had compassionate care from the beginning. She put us in touch with others who had walked this path before us.

As is the case with any pregnancy, the only certainty was uncertainty. There was no way to know how severe our baby’s health problems would be, or what physical or cognitive challenges she would face. But that was no different from when I was pregnant with my son. Of course, there was plenty to worry about, but without question, we knew her life was worth everything we could give, and that she deserved it as much as any other child.

Today, Lila is happy and healthy. Sure, she has many doctors and spends time each week working with therapists, but she also spends her days in school, loves music and dancing, and is eager to give you a high-five. Sure, she has an extra 21st chromosome, but she also has bright blue eyes and a smile that lifts even the lowest of spirits. If she can embrace life with such enthusiasm, we can certainly share her challenges and accomplishments with others. And others can certainly be more accepting and inclusive — of Lila and of everyone around us who might look or act a little “different.”

We know Lila’s purpose and her life have big meaning. We hope to share even a small portion of that with others, and dispel the myths and limitations falsely associated with Down syndrome. We know Lila’s life is limitless — just as any child’s should be, surrounded by people who love, support and challenge her!

Here are a few facts about Down syndrome from the National Down Syndrome Society:

Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with it — in all races and economic levels.

A few common physical traits are low muscle tone, small stature, an upward slant to the eyes and a single, deep crease across the center of the palm. Every person is unique and may have these characteristics to different degrees or not at all.

People with Down syndrome have increased risk for congenital heart defects, respiratory or hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. But these conditions are now treatable, so many lead healthy lives.

Life expectancy has increased dramatically, from 25 in 1983 to 60 today.

People with Down syndrome attend school, work and contribute to society in many ways.

To learn more about Down syndrome, visit the National Down Syndrome Societywebsite.