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Expecting something unexpected

One member's story

“Congratulations were definitely in order," says Wellmark member Jen Jacob about the day her son Owen was born.

“We felt such joy,” she says. “We knew he would have Down syndrome, so we were prepared. We were grateful he was born healthy despite the diagnosis.”

Owen was born in December 2012 to Jen and her husband, Brian. He arrived with chubby cheeks and reddish hair and spent a few days in the neonatal intensive care unit for low oxygen levels. He has two older brothers, Colton and Andrew, and a sister, Kate. They make their home in Granger, Iowa.

Looking for resources

Jen has come a long way from the day she first learned her son may have Down syndrome (DS). Just a few months before, she had searched online for the words “Down syndrome” and found bulleted lists of all the medical conditions her yet unborn child may experience. She also found incredible stories touting the amazing accomplishments of people with DS.

“It was really difficult to picture where our son would fit in,” said Jen. “It seemed like one extreme or another. Then, I found parent blogs. They were honest, real and raw, full of celebrations and challenges. This gave me a fuller picture of our potential future.”

Jen and Brian’s experience with Owen’s diagnosis, and her involvement in the online DS communities, left a lasting impression. Through it all, she has learned one important lesson. “Remember that no one can predict anyone’s future, especially when it comes to your family.”

Today, Jen is the executive director of the Down Syndrome Diagnosis Network (DSDN), a resource for parents who have recently received a diagnosis for their child or unborn baby. It provides an online community for more than 4,000 families touched by DS.

“A key part of DSDN’s mission is to ensure all families receive accurate information and resources at the time of diagnosis,” she says.

Jen also co-authored a book titled The Parent’s Guide to Down Syndrome. The book provides advice, information, inspiration and support for parents of children with DS, from diagnosis through adulthood.

Prenatal testing

Jen’s journey with DS began at a routine 20-week ultrasound, when the technician couldn’t find a nasal bone on the baby. This indicated the possibility of DS.

Since the likelihood of DS increases with the mother’s age, and Jen was 34 at the time of her pregnancy, she was presented with the choice between an amniocentesis and cell-free DNA test, which is basically a blood draw from the mother.

For Jen, it was fairly simple. She wanted the testing so she could know and prepare. She chose the cell-free DNA test.*

“It was an anxious week,” says Jen. “When we received the results, which were likely positive for DS, there was a relief in knowing. We moved forward.”

Before testing, it is important for parents to understand what the results may indicate and what you can do with the results.

“Today’s screening tools provide more accurate results than in the past,” she adds. “Unfortunately, most patients receive little information from medical professionals along with the testing results. Accurate information and connections to families are key parts of receiving a new diagnosis.”

*Every health insurance policy is different. To determine whether or not this type of testing is a covered benefit under your health plan, call the customer service number on your ID card.

A personal shift

“After having Owen, I have such a different set of dreams for my children,” says Jen. “As a former educator, I always imagined all my children going to college and finding their career paths. Today, I know the sky is the limit for all of my kids. More important than finding a career, though, I want them to find joy and purpose in their lives.”

"No one can predict anyone's future, especially when it comes to your family."

Jen Jacob

Through the thousands of families she has met online, Jen knows this is an incredible time to have a child with DS.

“These online communities are a lifeline for parents,” says Jen. “If you want advice about medical concerns or schooling, these people just get it. They know what you are going through and they want to help.”

The Jacob family also has a supportive local community of family and friends. “In our experience, inclusion is the expectation. Like everyone, Owen faces some challenges, like a speech delay. But, his friends and classmates just know that he is Owen and more like them than different.”

What Owen has now is what Jen hopes for him in the future. “Being a part of the community and continuing to find his purpose and joy — that’s what we want for him.”

The Parent’s Guide to Down Syndrome, co-authored by Jen Jacob and Mardra Sikora, is available online.

Get connected

Are you facing a Down syndrome diagnosis or do you know someone who is? Visit the Down Syndrome Diagnosis Network (DSDN) External Site. DSDN supports parents who have recently received a diagnosis for their child or unborn baby by connecting them to other families touched by Down syndrome.

Down syndrome facts

  • Down syndrome (DS) results from having an extra chromosome 21 or an extra piece of that chromosome.
  • In the U.S., about 5,000 babies are born each year with DS, according to the National Institutes of Health. That’s about 1 in 700.
  • There is no known cause for DS. It can impact every cell in a person’s body or just some of them.
  • People with DS have a higher chance of experiencing heart defects, hearing loss, hypothyroidism, speech delays, respiratory issues, cognitive and intellectual delays.
  • People with DS have a wide range of abilities, behaviors and development.
  • In 1983, the average life expectancy of a person with DS was a mere 25 years old. Today, it’s 60.

Source: National Institutes of Health External Site

Casie's big goal: run her first Grand Blue Mile

Wellmark member Casie Niday is an inspiring woman with Down syndrome. As part of her journey to live a healthy lifestyle, her goal was to complete her first Grand Blue Mile Opens New Window. The people at Train to Inspire helped her get there. Train to Inspire is a nonprofit organization that empowers physical, social and emotional health External Site for people with special needs.

Casie's Story