COVINGTON, La. (WVUE) -- On a warm November morning in John Slidell Park, dozens of people gathered for a special cause. Among them was a little Covington girl who has gone through something many adults could not imagine.
“At three weeks old from her newborn screening, the results came back. We had her tested at a pulmonary clinic. They did a sweat test and determined that she did have cystic fibrosis,” said Jennifer Thomas, mother of 5-year-old Ava.
Cystic Fibrosis is a disease that causes thick, sticky mucus to build up in organs like the lungs. Hearing the diagnosis was unsettling for Ava’s parents.
“Yes,” said John Thomas, Ava’s father.
Last year, Ava’s CF progressed.
“Very quickly,” Jennifer Thomas said. “She turned 4 on April 3, 2022, and she got admitted to St. Tammany Hospital on April 23 with low oxygen SATs. She wasn’t able to breathe well, so they ended up intubating her two days after she was admitted.”
From that north shore hospital, Ava later was transferred to Children’s Hospital New Orleans.
“And we were there for a week with the expectations of becoming off the ventilator by the end of the week and going home,” Jennifer Thomas said. “But that didn’t happen. They said, ‘You’re going to Texas, your daughter’s going to be evaluated for a possible lung transplant.”
“It was a shock,” John Thomas said, “because we were expected to be home at the end of the week.”
Ava was very sick at the time.
“She had pneumonia,” Jennifer said. “And with her having CF, her body just couldn’t fight it off.”
Ava was airlifted to Texas Children’s Hospital in Houston. Her parents drove there.
“John and I went home to get our stuff and that was the longest drive that we took, to go to finally be able to see her in the hospital,” Jennifer said.
While hospitalized in Texas, Ava’s situation became more dire.
“Two of the doctors called us into a conference room to have a conversation,” John said. “The conversation was not one that we wanted to hear.”
That was on a Friday, but on Sunday the parents were called back to the hospital.
“They sat down and they said, ‘Hey, we got lungs for Ava. And we’ve accepted them. We’ve gotten an offer and we’ve accepted them and Ava’s getting this set of lungs tomorrow,’” Jennifer said.
Still, worry did not vanish. The lungs needed to be tested.
“Just in the back of my mind, because it’s been such a long year, I was like, Please, Lord, don’t let this be a drag. And it wasn’t,” Jennifer said.
On Nov. 28, 2022, Ava was rolled to the operating room. The transplant surgery was a success and Jennifer and John got to see their little girl the next day.
The Thomases said they are very grateful to the parents of the young donor.
“We’re just thankful for the donor family, for making that sacrifice to save our daughter. Because I know that was hard,” Jennifer said. “All we know is that it came from a 5-year-old.”
Dr. David Moreno-McNeill, a pediatric pulmonologist at the Texas hospital and one of Ava’s doctors, said, “She has been the longest ECMO run, which is the heart-lung machine that we use to keep patients alive when their lungs are not working.”
To date, no other patient at Texas Children’s Hospital has stayed on ECMO longer than Ava.
“She remained on ECMO for 207 days waiting for the transplant,” Jennifer said.
After the surgery, Ava remained in the hospital for months longer. She had to do physical therapy.
“She was in bed for so long that her body was a little contracted, her legs were atrophied,” said her mother.
But in March, Ava was discharged from the hospital and left through a corridor filled with applauding hospital staffers. Her hospital stay spanned April 23, 2022-March 6, 2023.
Still, Ava could not leave Houston.
“She still had clinic and stuff after she was discharged, so we had to keep her nearby,” John said.
“She went home on oxygen and we were still weaning her off of pain medication,” Jennifer said. “And we got her off of all narcotic medications in May.”
The following month brought more good news.
“And they finally said June 3, ‘Y’all can go home.’ And we were in Texas for so long, we had to rent a U-Haul,” Jennifer said. “I cried.”
John, who had been traveling back and forth from Louisiana to Texas, was thrilled.
“It was amazing,” he said.
Ava, who along with her parents and other family members took part in the Cystic Fibrosis Foundation’s Great Strides event this month, walked and ran on the trail.
When asked how she was doing after her surgery, Ava said, “Good, good, good.”
Dr. Moreno-McNeill has been seeing Ava for months.
“I followed her before transplant and then after transplant,” he said. “She doing wonderfully. We’re all very happy with how she’s been doing. She is her spunky self. She is a star here at the hospital.”
Ava’s parents say she is a miracle.
“A hundred percent,” John said.
“She’s our miracle child, oh, 100 percent,” Jennifer said.
Family members calling themselves Ava’s Army were out in force at the park.
“My heart can’t find the words, to see her happy and healthy is just the most amazing thing. It’s the best feeling in the world,” said Ava’s grandmother Sandra Toups.
Moreno-McNeill stressed the importance of organ donation.
“Organ donation is important for everybody, especially for children,” he said. “It’s a big need. There’s kids on the list that are fighting for their second chance at life.”
Jennifer said she marvels at her daughter’s resilience.
“This kid, I’m telling you, is going to do big things in life,” Jennifer said. “She wants to be a doctor.”
And the Thomases have advice for families with children who have life-threatening diseases.
“Never give up,” John said.
“No matter how dark it is,” Jennifer added.
Post-transplant, Ava takes plenty of medications.
“She is on anti-rejection medications that she will be on for life,” her mother said. “She does great taking her medication. She swallows pills. She takes. She knows what all of her pills are for. She has a blood pressure pill. She has a blood pressure patch.”
Ava recently returned to Texas Children’s for a checkup and will continue to do so.
“The expertise really is in the follow-up, and having them come here pretty much her whole life,” Dr. Moreno-McNeill said. “She is going to be following up here her whole life until she becomes an adult, and then she goes to one of the adult centers. But she will be followed here at least every six months.”
A GoFund.me account has been set up for Ava: https://gofund.me/0cd0a149
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