“She was diagnosed with Trisomy 18,” says Melissa Engle of her daughter, Samarah Ann Engle-Grisby. “[Her doctors] told me she probably wouldn’t make it an hour. She made it 121 days.”
Samarah passed away on Monday after battling the effects of Trisomy 18. Her mother says she had three different heart defects, and her esophagus was not attached to her stomach when she was born. Samarah was on and off a ventilator throughout her short life. She survived six different procedures, including a surgery to attach her esophagus to her stomach.
“She was a fighter through everything,” Engle, who lives in Warsaw, says. “She was very feisty and very strong.”
This past Saturday, Samarah left the hospital and was taken home. “She got to spend two precious days at home with her loved ones,” says Engle.
On Monday, Engle says Samarah wasn’t acting herself. Engle tried to make her comfortable, while Samarah’s father, Carl Grisby, ran out to pick up the baby’s medicine from the pharmacy.
“All of a sudden her monitors started going haywire,” Engle recalls. “I started doing CPR.” Grisby returned home and Engle told him to call 911, but, despite everyone’s best efforts, Samarah did not survive.
“I watched her take her last breath,” Engle says, her voice shaking. “I don’t believe she was done fighting. I think her heart couldn’t handle it anymore.”
According to the Trisomy 18 Foundation, Trisomy 18, also called Edwards Syndrome, occurs in 1 out of every 2,500 pregnancies in the U.S. Babies with this condition have three number 18 chromosomes rather than two, and may be born with an number of ailments, from organ defects to deformities to growth and developmental delays.
Roughly half of the babies diagnosed with Trisomy 18 will be stillborn. Only 10 percent will survive to celebrate their first birthday, with baby boys having a higher mortality rate than girls. A small number of afflicted, usually females, may live into their 20s or 30s, but due to developmental issues resulting from the disease, they are rarely able to live independently without a caregiver.
Samarah was able to defy odds, living four months longer than her doctors expected, but her fight was costly. “The family needs help with numerous medical bills and funeral expenses, as they only have one income and an eight-year-old daughter as well,” says Brook King, a friend of the family, and former WCHS classmate of Engle.
Grisby and Engle started a GoFundMe page to help cover the expenses. “I started it awhile back because we were getting some hefty hospital bills,” says Engle.
Unfortunately, the page hasn’t gotten much attention. Engle says she recently updated the page and hopes more funding will come in to assist with the hospital bills and funeral costs.