Guest Blog: So, Your Baby Has Down Syndrome

In support of Down Syndrome Awareness Month, we are happy to present this guest post from Teresa Unnerstall. She is a parent of Nick who is 20 years old and has Down syndrome and autism. Teresa is a writer, speaker and advocate. She is currently working on a memoir about raising her son Nick. Her blog, “Down Syndrome With A Slice of Autism” covers a variety of topics related to special needs and can be found at www.nickspecialneeds.wordpress.com and on Facebook.

In October everything turns pink for Breast Cancer Awareness Month. But did you know it’s also Down Syndrome Awareness Month?

Twenty years ago I gave birth to my son Nick. Shortly after he was born they whisked him off to ICU due to breathing difficulties. Some 30 minutes later the doctor came in along with a few hospital administrators. Their faces were grim. Had my son died? I took a deep breath as the doctor began to speak.

“Your baby has several markers that indicate he may have Down syndrome.”

My knowledge about Down syndrome was minimal. At the University of Texas, I completed several internships working with students who had Down syndrome. My mind raced back to the actor Chris Burke, who has Down syndrome and starred in the television show “Life Goes On.”

The next day, a hospital social worker handed me two brochures about Down syndrome. That is was what I had to work off of.

Following are important facts about Down syndrome courtesy of The National Down Syndrome Society, www.ndss.org:

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • A few of the common physical traits of Down syndrome 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 with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 years old in 1983 to 60 years old today.
  • People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

I think back on that 33-year-old mom who was unsure of her future. What advice would I give her today?

First, I would say that everything was going to be OK. The path will be different and move slower. But your child will work through the low muscle tone with the help of early intervention programs. The benchmarks like sitting up, crawling, walking and eating solid food will take longer to reach. Be patient and rest assured that your child will hit them.

The next thing I would tell her is that there will be angels that light a path along the way. Embrace them and incorporate what you learn at home. The speech therapists will teach him how to blow bubbles, work on lip closure, feeding and to use sign language along with songs to communicate. The occupational and physical therapists will guide him in fine and gross motor skills. The teachers will hold the lantern and illuminate his mind. The social support groups will be your shoulders to lean on.

Finally, I would share this message.

Your baby was born with Down syndrome, but he is a person first. People with Down syndrome experience the same emotions that you and I do. Your life will change for the better as you savor the sweet victories. He will steal your heart and touch others in ways you can’t imagine. Your child will bring a unique perspective of seeing the best of the human spirit.

This is my advice to the young mother who just gave birth to a beautiful baby, who just happens to have Down syndrome. Oh, and watch out for those fire alarms.