“It’s been a rough go, but it never crossed my mind to not try and get her a heart,” said Kevin Fox, Autumn’s father.
GAINESVILLE — While most infants her age drink from bottles and scoot across floors, Autumn Fox lies in a hospital bed, tubes and wires protruding from nearly every part of her tiny body, waiting for a new heart.
At 8 months old, life on the 10th floor of UF Health Children’s Hospital is all she’s ever known.
On a good day, her parents, Nicole Smith and Kevin Fox, partners of nine years, can get a quick smile out of her. But the bad days are far more frequent.
“It’s very hard,” Smith said. “With a heart, you never know if you’re going to get called.”
Autumn’s story starts before birth. She was born eight weeks early. The Tallahassee couple’s other three children — Haley, 8, Mayson, 6, and Braidyn, 2 — also were born early, but the complications with Autumn’s birth were unlike anything the family had experienced.
Issues began during the pregnancy when Smith’s body produced excess amniotic fluid. At 27 weeks, she was measuring as if she were at 44 weeks, she said. She was sent to UF Health Shands Hospital and later had a cesarean section surgery.
Born Aug. 8, 2018, Autumn weighed 5 pounds, 5 ounces. She suffered two brain bleeds and couldn’t breathe on her own. Doctors kept her intubated.
“I didn’t get to see her,” Smith said. “It was nine days before I got to hold her.”
Smith and Fox said they were told that their daughter may never walk or talk and that she may use a wheelchair for life, but were still hopeful.
It wasn’t until 70 days later, on Oct. 17, that the family took Autumn home to Tallahassee for the first time. She was on home oxygen and a pulse monitor.
The family found out during a follow-up appointment the next week that there was an issue with her heart. She remained stable, until a month later, when her heart and lungs stopped properly working.
“I had to do CPR and breaths to get her back,” the mother said.
A week later, Autumn coded again.
Doctors told the family that Autumn’s heart was only functioning at about 25 percent of its capacity. She was sent to Shands again, from Tallahassee, to prepare for heart surgery to fix her aorta. The family spent the next month in and out of hospitals as they geared up for Autumn’s surgery.
On Jan. 11, after another emergency room visit for unresolved complications, they feared the worst. They soon learned their daughter needed a far more complicated surgery.
Autumn needed a new heart.
On Feb. 18, Autumn was placed on a waiting list for a heart transplant. In the following weeks, she was put on life support with an ECMO (extracorporeal membrane oxygenation) device and received a Berlin Heart — a heart pump used for babies and children — to keep her heart working.
She is hooked up to a feeding tube. A host of wires and other tubes sprawled across her body and bed keep her alive. Now at 8 months old, Autumn weighs about 9 pounds, roughly half of what a baby her age should weigh.
Since her birth, the family says they’ve only spent a total of five weeks at home. The kids have missed out on birthday parties and major holidays. Haley, Autumn’s older sister, says she loves opportunities to visit her baby sister, giving her kisses and making her smile.
“We’re hoping and praying that she’ll have her a heart soon and have her home by August or September at the latest,” Fox said.
The constant back-and-forth from the hospital cost both parents their jobs. Fox had a lawn care business that went under in effort to help sustain Smith’s at-home day care, which dissolved soon after. Family members have taken turns watching their three other kids as the parents traveled.
A few months ago, the family officially moved from Tallahassee to Gainesville and sold their belongings. They spent about four months at the Ronald McDonald House before finding an apartment in March, where they’re still looking to get set up.
A picture and clock sit on the floor. No one’s had a moment to hang them on the wall.
“We just haven’t had time,” Smith said.
Smith spends the bulk of her days visiting Autumn and talking to doctors and nurses or waiting for updates. In between those trips, the parents cater to their other children by getting them to and from school, picking them up from day care, cooking dinner and getting them ready for bed. They repeat the cycle the next day.
Even to someone who doesn’t know Smith and Fox well, the couple appear exhausted from the constant demands. The burden of their daughter’s situation weighs on them constantly, though they don’t allow themselves the luxury of being overly emotional about it. They can’t.
After depleting their savings, the couple reluctantly set up a GoFundMe page (www.bit.ly/2ZPyutp) and have been living off donations since. As of Tuesday, they have raised about $12,700. They say they have enough money to pay bills for about two months.
The family is also selling “Team Autumn” T-shirts through part of a campaign at www.bonfire.com/team-autumn.
Fox initially found a job with the city of Gainesville as a maintenance worker, but says he had to quit to watch the kids and get them to and from school. The Child’s Garden, a day care off Northwest 16th Avenue, has offered the family some assistance with free day care. The Tallahassee-based Aenon Baptist Church also has helped the family financially.
“They’ve been a big help to us for the past couple months,” Fox said.
The couple say they have never considered giving up on their daughter, and are hopeful that all the struggles will pay off in the end. But to save Autumn’s life, they know another child has to die for a heart to be available. Autumn can receive a heart from another infant up to a year old, her dad said.
“It’s been a rough go, but it never crossed my mind to not try and get her a heart,” Fox said.