In November 2013, Lauren Ungar’s first child, Jonah, was born with Down syndrome.
“One of the first things I did was go to the Internet and look for a support group for moms, and the first resource I found was the Down Syndrome Association of Greater New Orleans,” Ungar recalled. “But to my surprise, there was no support group for moms, only a support group for dads.
“I knew I needed support and that other moms probably needed the support of women, too, whose children had Down syndrome.”
Ungar, who lives in Metairie with her husband, Hal, said she contacted Patricia Ehrle, who was, at the time, the association’s outreach chairwoman.
“Pat allowed me to become a point person for new moms who were contacting the organization for the first time,” Ungar said. “She also gave me new mothers’ contact information, and I began calling, emailing and meeting them in person to connect about our children and our stories.”
After working on the association’s outreach to new moms, Ungar wanted to do more, to “go one step further.” So she, along with Sara Sporar and Ashley Keifer, began the NOLA Down Syndrome Moms group as “the sisterhood” of the association.
The NOLA Down Syndrome Moms group can be found on the association’s website — dsagno.org/nola-ds-moms. The group, which also has a Facebook page, was formed around September, and Ungar said they have had five meetings and social events so far.
“Our members have children ranging from newborn all the way through adulthood,” Ungar said.
Down syndrome is a genetic disorder caused when abnormal cell division results in an extra chromosome. This disorder, which varies in severity, can cause lifelong intellectual disability and developmental delays, and in some people, it causes health problems.
Ungar said NOLA Down Syndrome Moms recently completed its first project.
“It’s called the Hospital Bag Initiative, and our goal is to equip every hospital in the greater New Orleans area with a tote bag that contains information and gifts for new mothers who receive a Down syndrome diagnosis for their child,” Ungar said. “At the moment, East Jefferson General Hospital and both the Ochsner main and Baptist campuses currently have tote bags. And Children’s Hospital, West Jefferson General Hospital and the Kenner campus of Ochsner have signed on to receive bags.
“We hope receiving a bag filled with clear information will help mothers to first, not panic, and second, to know they are supported by other mothers in their immediate area.”
Sporar’s son, Gage, is 14 months old and was diagnosed at birth with Down syndrome.
“It’s a comfort and a joy to always know that there are other moms who are walking right alongside me during each bad day and celebrating each new milestone,” Sporar said. “I hope to create lifelong friendships for not only myself but for Gage. Having a peer group with children like Gage will help him to feel accepted and loved. And having a connection to moms with children who have Down syndrome that are of different ages and abilities will help me to make the best decisions for Gage in order for him to reach his full potential.”
Keifer’s daughter, Lilli, will be 2 at the end of June. She said she found out that Lilli had Down syndrome when she was pregnant.
“It was a whirlwind of emotions from excitement to terrifying,” Keifer recalled. “Not having someone who understood those feelings and the path our lives would take was very isolating. To me, it’s important that other moms in that situation know those feelings are normal and have someone to talk to and a place where they can see our kids thriving and succeeding. Our group understands all those feelings. It’s a lot less daunting to know we’re all in this together.”
Ungar said being a part of the moms group is therapeutic.
“By doing something productive to help other moms like me, especially new moms, and to help create a community of friends and mentors for Jonah is the most positive thing I can do for myself and my family,” Ungar said. “I know that Jonah is making lifelong friends and other parents are getting to know him from the beginning of his life.”
Ehrle’s son, Craig Blackburn, is 36.
“I, like the NOLA Moms, always believed that Craig should have every opportunity to reach his greatest potential in life,” Ehrle said. “I am proud to say he has and still continues to do so. Lauren, Sara and Ashley are amazing young women and mothers. They, like other parents, want to ensure that their children have the opportunity to reach their greatest potential and are able to lead as typical a life as possible.
“When parents and families first receive the news that their child has been born with Down syndrome, there are many emotions experienced, of which one often is fear about their child’s future,” she said.
NOLA Moms can be the first contact that the parents have. “This group can be instrumental in changing a fearful experience into a positive picture for their child’s future,” Ehrle said.
Keifer said the NOLA Moms group also is working to end the statement “I’m sorry” that often comes with the diagnosis of Down syndrome.
“That statement gives the first impression that Down syndrome is a terrible thing, that there is something to be sorry about,” Keifer said. “Sure, there are complications that come with having a child with Down syndrome, but it is far from terrible. We want the delivery of this diagnosis to be more along the lines of ‘Congratulations, you have an extraordinary child.’ ”
For more information about the NOLA Down Syndrome Moms, email Ungar at nolads firstname.lastname@example.org.