Pukalani girl featured in national video
October is Down Syndrome Awareness Month
Last October, around the 20th week of her pregnancy, Pukalani resident Stephanie Garcia got a call from her doctor reporting the results of her genetic testing — they’d come back positive for Down syndrome.
“I felt a lot of fear and uncertainty,” she remembered.
Garcia and her husband, Elias, had a lot of questions. Mainly, how would life look for their baby? But as the couple read books and blogs and watched videos of inspirational figures with Down syndrome, they felt hopeful. As Stephanie Garcia points out, Down syndrome is “not what it’s made out to be.”
“There are amazing adults with Down syndrome out there,” she said Sunday. “They’re strong in what they do. They’re intelligent. . . . There’s so much to look forward to in our future and we’re so excited to share with our world and our community about how people with Down syndrome just defy the odds every day.”
This month, the couple’s 6-month-old daughter, Elianna, and around 500 other children, teens and adults showed people what defying the odds looks like as part of a video by the National Down Syndrome Society that debuted in New York’s Times Square on Sept. 16.
Elianna was selected from among 2,000 entries in the organization’s worldwide call for photos for its annual video, which aims to promote acceptance and inclusion and to remind viewers of the accomplishments of people with Down syndrome, according to a news release. The video was followed by the 23rd annual Flagship Buddy Walk — a fundraising and awareness event — in New York City to kick off Down Syndrome Awareness Month, which is October.
“I was so excited for that,” said Stephanie Garcia, who found out in August that Elianna would be featured. “It’s a great way to help spread awareness and acceptance and build community.”
For six years, the Garcias had been trying to have their first child. They decided to give in vitro fertilization a shot.
“When I finally got pregnant, it was this huge miracle,” Garcia said.
On March 15, Garcia was medevaced to Kaiser Permanente Moanalua Medical Center on Oahu, where she gave birth to Elianna. The delivery went well, but doctors found two holes in Elianna’s heart and noted that she had trouble breathing. She was taken straight to the neonatal intensive care unit. The Garcias spent 16 to 18 hours in the hospital every day for more than three weeks.
“It was just heartbreaking to leave her there,” Stephanie Garcia said.
Elias Garcia’s mother arranged for the couple to stay at the Hokulani Waikiki by Hilton Grand Vacations, where the valets found out their story and would park their car free of charge.
Cardiovascular problems aren’t uncommon in babies born with Down syndrome. The incidence of congenital heart disease in children with Down syndrome is 40 to 60 percent, as compared to the 0.8 percent risk among the general population, according to the National Association for Child Development.
“But it was a blessing because she recovered really quickly and didn’t need heart surgery, which was one of the biggest things we feared,” Stephanie Garcia said. “She’s a fighter, and she came through.”
Within two weeks, doctors took Elianna off the monitors. She spent some more time at the hospital learning how to eat before the Garcias were finally able to bring her home to Maui after 24 days.
“She just started eating and eating and eating. So that wasn’t a problem anymore,” Stephanie Garcia said, laughing. “She’s meeting all her milestones, and she’s just a joy to everyone.”
Elianna is eating well — she recently discovered a love for baby cereal and milk — and is steadily developing her fine motor skills, which can sometimes be delayed in children with Down syndrome. She passed her hearing test twice, can hold her own head up and is able to roll from her back to her stomach. Stephanie Garcia said that some days she’ll stress over what Elianna should be doing next, only to discover that her daughter has figured out how to do it without any prodding.
With the help of organizations like Imua Family Services, local families the Garcias have met and Facebook groups they’ve joined, the couple is learning what to expect along the way. Having Down syndrome may mean more doctor appointments for Elianna in the future, as well as physical and/or speech therapy.
“Just working with her early on in her development is the key,” she said. “You can easily be like, ‘Oh my goodness. It’s going to be hard for her. She’s going to struggle through school.’ All these thoughts and things that, if you don’t know, can kind of bring you down. But once you start to read these inspiring stories and see what these kids are doing, it’s very inspirational.”
The Garcias plan to show Elianna all these stories when she’s older. And the new parents are hopeful because there are many resources available for children with Down syndrome — from athletic programs to college scholarships.
“Some people call it ‘Up syndrome,'” Stephanie Garcia said. “Nothing down about it.”
Things are looking up for the Garcias, too. As small-business owners of Aloha Kettlecorn Co., they’re planning to open their first brick-and-mortar location across from the Pukalani McDonald’s in November. The business has been going so well that Elias Garcia plans to leave his job as a corrections officer to work at the kettlecorn operation full time. For now, Stephanie Garcia plans to stick with her job as a nurse practitioner with Kaiser.
* Colleen Uechi can be reached at firstname.lastname@example.org