As a parent, the ultimate fear is for a doctor to give you bad news concerning the health of your baby. Our heads spin, and we instantly feel heart broken, maybe even physically ill. HealthLife met with two moms, Christina Moore and Jean Kuo, who feel lucky to be raising two amazing children who are diagnosed with Down Syndrome. For them, it is a blessing and an everyday adventure they wouldn’t trade for anything in the world.
Christina and Jean are the current President and Vice President of a local non-profit, Down Syndrome Association of South Georgia (DSASG). The organization’s goal is to build community connection, create more inclusion, and provide education and social support to individuals with Down Syndrome and their families.
DSASG raises funds through golf-tournaments, and buddy walks to provide that social support. Adults with Down Syndrome often lose the social support within the community because there are fewer available events for adults.
DSASG also understands that the way medical professionals deliver the news your child has Down Syndrome can be too clinical. Due to this, DSASG wants to help medical professionals change their verbiage when delivering these messages along with changing the narrative on Down syndrome.
“The information you tend to get from medical providers is heavy causing people to often focus on the more likely chronic illnesses they may develop or the things your child is not gonna do,” said Jean. “First of all you’re probably wrong, but be open to see what they [your child] can do. It is similar to raising any other kid. You don’t know what their strengths or weaknesses are until they show you.”
DSASG is building relationships with local medical professionals in order to help provide support to families newly informed of their child’s diagnosis. They partner with a medical outreach program through the Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky Human Development Institute implementing training and workshops in order to provide the medical community with more accurate and updated information on Down Syndrome.
“It’s the wording,” said Christina. “Doctors often say I’m sorry. Just say congratulations. Your baby has Down Syndrome and that’s wonderful. You have so much to look forward to.”
New parents receive welcome baskets filled with love. The baskets help new parents understand they are not alone and have support within the community. Welcome baskets include gifts, handwritten notes, sensory toys, educational materials, flash cards, and books written by other parents of Down Syndrome kids as well as a bracelet designed specifically for parents of Down Syndrome children.
After the initial shock of the diagnosis, parents of children with Down Syndrome consider themselves “The Lucky Few.” This bracelet is their universal symbol of three triangles representing the three 21st chromosomes and how the families rise and move forward. Down Syndrome is a genetic disorder where a child is born with a copy of the 21st chromosome called Trisomy 21. According to the CDC, about 95% of people with Down Syndrome have Trisomy 21, meaning each cell in the body has three separate copies of chromosome 21 instead of the usual two copies.
The extra chromosome accounts for many of the wonderful features associated with Down Syndrome. Another reason parents feel like The Lucky Few is that children with Down Syndrome do not physically change as quickly as other children due to their low muscle tone.
“I remember the NICU nurse being like she’s fluffy,” said Christina. “My daughter has softer fluffier skin. She’s so cuddly.”
“I remember my daughter’s pediatrician tickling her stomach and saying, ‘She’s a little doughy,’” said Jean.
They are also blessed with smaller hands and feet and a shorter stature. A parent can enjoy those squeezable, squishy baby years a little longer.
Down Syndrome children often live in the present more often than typical kids. They live in a world of wonder showing the people around them how to take a breath and enjoy the little moments. DSASG is taking control of the societal stereotypes, showing families they can push past the fear, not dwell on limitations, and empowering parents to enjoy their children’s ability to blossom.
So… audience, I encourage you to salute March 21st! Toast to World Down Syndrome Day as a beautiful day to honor the differences within our society. Observe this day to celebrate the uniqueness of the ones born with three 21st chromosomes.
By Erica Thrift