While 2017 is a year many Americans won’t soon forget, Latoya Evans and her family of Mehlville, Missouri had more immediate concerns beyond the upheaval of the nation’s political and social climate. Evans and her husband Mike Coleman were expecting baby number two to join big brother Arihyan. During her pregnancy and on her birthday, Evans found out she had breast cancer.
She underwent a lumpectomy during her second trimester, followed by a mastectomy after it was determined the cancer had spread.
During an ultrasound sometime around her 26th week of gestation, Evans got more disturbing health news, but this time it was her baby.
“We found out kind of late in my pregnancy about her heart condition,” she said. “They diagnosed her with hypoplastic left heart syndrome, which means that the left side of her heart was just so underdeveloped that it was nonfunctional. Pretty much, only her right side of her heart was working.”
Babies with hypoplastic left heart syndrome are unable to pump oxygen-rich blood to the body properly. The Centers for Disease Control and Prevention says one in 4,344 babies in the U.S. are born with this congenital birth defect.
During Evans’ pregnancy, her body compensated for what the baby’s heart could not do. Once the baby was born, the condition had to be addressed surgically. Baby Ari was delivered a few weeks early because Evans developed pre-eclampsia, a complication of pregnancy.
Since that time, baby Ari has been under the care of a cardiac surgeon at St. Louis Children’s Hospital.
“There was a narrowing in a part of her heart that normally is supposed to be more dilated,” Evans said, “It was pretty serious, because it does something with the blood and, if that would have closed off, it would have caused backup in the blood into the body and lungs.”
When she was eight days old, the baby underwent open-heart surgery. Over time, multiple surgeries will be needed to address Ari’s condition to increase blood flow to the body and to bypass the left side of her heart that is functioning poorly. While these surgeries do not cure hypoplastic left heart syndrome, they help restore heart function.
Ari is now four months old and is fed via feeding tube because of her complex medical condition.
“She is doing okay,” Evans said. “We are struggling with weight gain. She can’t suck a bottle because she gets so tired – it uses so much of her energy.” The baby needs to pick up enough weight to have her next surgery.
Her parents decided that her father, who works in construction, will stay at home to care for the baby while her mother, who has better health benefits, returned to work. Because of her condition, doctors advised them against putting the baby in daycare.
While the family is adjusting to their new reality, Evans said it’s probably harder on Ari’s big brother, Arihyan, who, while he enjoys his big brother status, is accustomed to being on the go.
“It’s harder on him because he was the only kid for nine years and then,” Evans said. “Now not only is he no longer the only kid, but we have the baby and she comes with problems that require our attention. He is so used to us just getting up and leaving and doing stuff and he doesn’t really quite understand why we can’t all get up and leave out of the house.”
Winter single-digit temperatures and an infant in fragile health demand a pause on optional excursions.
Meanwhile, Evans is moving past her own cancer diagnosis and treatment to restoration. She is thankful she didn’t have to undergo chemotherapy or radiation. “I’m doing okay,” she said.
Her coworkers are amazed that she maintains a positive outlook, despite all of what she and her family are going through.
“You’ve got to think positive,” she said. “You want to stay positive.”
