Sophia Stebing

November 29, 2021

It’s the smile on 18-month-old Sophia Stebing’s face that quickly spreads to others nearby.

Her mother fondly remembers the first time she saw it. “It took maybe two or three months for her to start smiling,” says Jessica Stebing, who would exaggerate a smile to show Sophia how it’s done. “And then one morning she just woke up and gave me the biggest smile and now that’s how she always smiles. She will smile with her entire face.”

Jessica and Chris Stebing were overjoyed to learn they were expecting their first child in July of 2019. A few months later, a routine ultrasound revealed they were having a little girl. But the ultrasound did not detect a nasal bone, which is an early indicator of Down syndrome. Additional testing found there was a 99 percent chance their daughter would be born with Down syndrome, so a team coordinated by Riley Maternal Fetal Medicine Specialist Jennifer Weida, M.D., worked closely to carefully develop the safest birth plan given Sophia’s diagnoses.

Sophia was born safely on St. Patrick’s Day “with a beautiful head of red hair,” says her mom. Since children with Down syndrome commonly have heart issues, doctors performed an echocardiogram that revealed several heart defects. At 5 months of age, Sophia underwent heart surgery at Riley Hospital for Children at Indiana University Health. The surgery went well. “We were so grateful to take her home,” says Jessica. “Then for her to come through on the heart surgery so well. They think that will be the only heart surgery that she’ll ever need.”

Jessica says before heart surgery, Sophia was struggling to put on weight, but today she is growing and thriving. In addition to regular checkups, Sophia has a full schedule of weekly physical therapy appointments to develop fine motor skills.

“I hope she can be a positive role model and a positive face for people with Down syndrome,” says Jessica. “Sometimes Down syndrome is not presented in the best way, and people are afraid of what that can look like. My hope is that she can put a new spin on things and that people can see what a blessing it is to have a child with Down Syndrome.