Welcome basket provides support for families after Down syndrome birth
An Antioch mom who connected with others to start an online resource for parents of children with Down syndrome is taking the message into the field.
Working with the National Association for Down Syndrome in Park Ridge, Jenny DiBenedetto created a program to deliver welcome baskets to hospitals for families whose newborns have Down syndrome.
Launched this month after about a year in development, the program shows support for and provides current information and resources to families during a difficult time. So far, three baskets have been delivered to families at Highland Park Hospital and Advocate Condell Medical Center in Libertyville.
"Our long-term vision is to expand to all the counties in the Chicago area," said DiBenedetto, whose son, Gianluca, was born with Down syndrome on Oct. 2, 2012. A lack of information at the time led her to connect online with fellow mothers trying to learn more about the condition. The result in March 2014 was the Down Syndrome Diagnosis Network.
Down syndrome results from additional genetic material that alters the course of a child's development. Low muscle tone, small stature and an upward slant to the eyes are common physical traits, according to the National Down Syndrome Society.
One in every 691 babies in the U.S., or 6,000 each year, is born with Down syndrome, the organization reports.
DiBenedetto said the news is sometimes poorly shared by medical professionals to families who already are feeling isolated.
"It really affects the trajectory of that family. It doesn't need to happen that way," she said.
"That's why it's so important these families get accurate, updated information."
The baskets include "a lot of handmade stuff" like knitted teddy bears, bibs and blankets, as well as books and a roster of resources, DiBenedetto said.
Ann Garcia, family support coordinator for the National Association for Down Syndrome, said the pilot program is starting small so that lessons learned can be used to fine-tune it as it expands.
"Our hope is every baby that delivers (with Down syndrome) in Lake County will get a basket," she said. Getting a network of volunteers in place to take the contacts and make arrangements has been key.
"We want to make sure we get the referral and get the basket to the families" at the hospital, Garcia said.
If you are interesting in donating to the program, click here.