Second-grader Zoe Zubiate waited for her photoshoot last weekend dressed in her favorite Wonder Woman costume.
Why Wonder Woman?
"She's strong and brave like me."
But not even her favorite superhero has endured a heart and liver transplant and 10 months in the hospital as Zoe recently did after contracting covid-19.
She perched last Saturday in a giant display of balloons in her front yard, waiting for that photographer when a long line of Siloam Springs Police and Fire department vehicles slowly paraded down her street with signs and waving officers welcoming her home.
Then 30 or so carloads of friends and family followed.
"It feels good to be with my family and my friends and my sisters," she said. "I missed them a lot. I used to cry for them every day."
Zoe was born with propionic acidemia, a rare health condition. When she got covid-19 in November, it left her in need of organ transplants. She spent the next 10 months in St. Louis Children's Hospital before receiving her new heart and liver on Aug. 31.
She returned home about three weeks ago with her parents, Carlos Zubiate and Cristina Trillo, and sisters Miah and Azul Zubiate.
"We're so grateful she's home," Trillo said. "We are so thankful, we don't have words."
Zoe's journey began when she was diagnosed at 9 months old, her mother said. The rare, inherited disorder makes her body unable to properly process proteins and fats.
Her family was able to manage her condition for most of Zoe's life with a careful diet. Then, in 2020, she began to rapidly decline, her mother said. Because her liver can't properly process protein, it gave off toxins that damaged her heart, causing dilated cardiomyopathy, she said.
Zoe was in the hospital waiting for a heart transplant early last fall when her medical team brought the condition under control with medication and sent her home, Trillo said. Doctors thought the medication would control Zoe's condition for months -- maybe even years, she said.
Zoe became infected with covid-19 15 days after leaving the hospital. The virus attacked her lungs, and her heart fought to keep up, her mother said.
Her doctors used an extracorporeal membrane oxygenation machine to do the work of her heart and lungs, but she had to be sedated, her mother said. Being attached to the machine was hard at first, but she got used to it, Zoe said. She was able to unplug for 30 minutes twice a day to walk, play, and dance.
Zoe underwent an open-heart procedure in December to switch her to a Berlin Heart pump, which attached to blood vessels in her abdomen and allowed her to be awake and move around.
The family received the call they had been waiting for Aug. 30, and the heart and liver transplant took place the next day, Trillo said.
"We were so thankful, we couldn't believe it," Trillo said. "Zoe was crying. We were so happy and crying. A lot of kids don't get a transplant, they pass just waiting. We were so thankful to get the call."
Covid-19 and kids
While children are generally less susceptible to severe cases of covid-19, they do occur, said Dr. Marti Sharkey, pediatrician and Fayetteville public health officer. Sharkey isn't Zoe's doctor and isn't familiar with her case.
Arkansas has had several pediatric deaths from covid-19, and children with conditions such as Zoe's are at high risk for severe complications or death from covid or any infection, Sharkey said. Other high-risk conditions include cancer, leukemia, solid organ transplants, and even asthma and obesity, she said.
Arkansas as of Friday had seen 95,439 cases of covid-19 in people age 18 and under since the pandemic began, according to the Arkansas Department of Health. Of those, 886 have been hospitalized and 111 have been treated in intensive care units. Three children younger than 18 in the state have died, the department website states.
Everyone in the community should take precautions to protect the most vulnerable people, Sharkey said.
Children with high-risk conditions, such as Zoe, need as many layers of protection as possible to keep them from getting an infection, including proper ventilation, social distancing, and to have those around them be vaccinated and wearing a mask, Sharkey said.
"Not any one of these things is perfect 100%, but when you layer them upon each other, you greatly, significantly, reduce the risk of transmission," Sharkey said. "We have to do these things to protect the least of us. You need to wear a mask to protect a little girl such as Zoe. You don't know when you are going to encounter someone who is at high risk."
Joyful homecoming
Zoe's family is excited to be home and adjusting to everyday life, Trillo said.
Trillo is hopeful her daughter can start school soon, although doctors give conflicting opinions about when that will be, she said.
Zoe's welcome-home parade was a group effort, said Shane Duncan, a firefighter, and paramedic. Family member Ali Trujillo reached out to the department about organizing a parade. Firefighters love to help and give back to the community, especially when they can put a smile on a child's face, he said.
"Going through something that Zoe did is not a pleasant thing," Duncan said. "She was in the hospital for nearly a year, and we wanted to make her feel special and give her a nice welcome home."
She took online classes at Allen Elementary School while in the hospital with the help of a Chromebook and a hospital teacher, her mom said.
The entire school staff was elated to hear Zoe's surgery was a success and she was able to come home, said Principal Michelle Paden. Paden was principal of Northside Elementary School when Zoe was in kindergarten there, then moved to Allen Elementary.
Paden said Zoe has one of the best attitudes and happiest dispositions of any kid she has ever met.
"She has gone through more than most adults could even think about enduring and has done it with such grace and a positive attitude," Paden said. "It's an inspiration to everyone."
Trillo said her family is incredibly grateful Zoe was given the gift of life.
It's unclear if the liver transplant will allow Zoe to eat a normal diet or whether her previous case of covid-19 will give her immunity in the future, Trillo said. She will also have to continue testing to make sure her body doesn't reject her new organs.
Trillo hopes her daughter's story will encourage more people to sign up to be organ donors.
"I feel like we should all be organ donors. It's just the last gift we can give before dying."
