BRIDGEPORT — Little Ava Walczak doesn’t look sick.
The sandy blonde, bony 5-year-old wrestles with her younger sister, plays hide-and-go-seek at her Bridgeport home and gets twirled around in the arms of relatives.
Yet within her petite frame sits an ailing heart, its shrunken and damaged arteries putting the youngster’s life at constant risk.
Doctors have told the Walczaks that kids with Ava’s condition have died in their teens.
"It’s not something nice to say,” said Colleen Young Walczak, 37, Ava’s mother, "but to me if I were to lose Ava I’d rather it be young because I don’t want her to know, being 9 or 10, and asking ‘When am I going to die?’ It’s scary."
Hope for Ava
Friends have organized the "Hope for Ava" campaign, which aims to raise money for the family’s growing stack of medical bills.
(In a cruel twist of fate, Joseph Walczak, Colleen Young Walczak's husband, learned recently he'll be laid off soon, and Colleen, an employee of Mercy Hospital, has broken her leg, leaving her with disability payments for a while. Both incidents have put the family's medical insurance at risk.
The campaign has started in earnest, with fundraising dice games in the neighborhood and the sale of red rubber bracelets. Earlier this week, the Bridgeport restaurant Ricobene’s donated a portion of proceeds to the cause.
The group behind the campaign, made up of about a dozen of Young Walczak's childhood friends, will organize a bar crawl in January and a blowout benefit a month later. See the group's Facebook page for details.
Just this week, Ava was interviewed by representatives from Make-A-Wish, which arranges vacations for kids with life-threatening illnesses.
If the doctors allow it, she's hoping to swim with dolphins and act like her favorite Disney princesses on a Caribbean cruise. Or maybe she’ll sleep in the Disney castle.
'You Take the Chance'
Moments after she was born in 2008, Ava was rushed to the neonatal intensive care unit, where doctors found a tear in her heart and diagnosed her with the heart defect Tetraology of Fallot, commonly called “TOF."
Hospitalized for three weeks, Ava underwent surgery to insert a shunt, a strawlike device designed to improve the flow of oxygen to her heart and lungs. Doctors figured her undersized pulmonary artery and its branches would grow as she got older, but they didn’t develop.
So as Ava turned 6 months old — an age when babies sprout their first teeth — doctors ordered open heart surgery to repair her problems.
"She could have died. You take the chance," her mother said.
For months, the family thought Ava's problems were fixed.
But a routine visit with a pediatrician revealed bad news: Ava had an aneurysm on her heart, and her arteries — required for carrying blood from the heart to the lungs — still hadn’t gotten larger.
Doctors ordered another open-heart surgery, this time to repair the aneurysm and replace a heart valve they discovered had badly deteriorated.
And still the main pulmonary artery hadn't grown, its associated branches hadn't developed and the replacement valve had since started to leak.
Add it all up, and doctors say the girl's heart is working five times harder than normal. If the pressure on her heart remains that intense, it will affect the length and quality of her life.
"Eventually, the heart will work less well and eventually fail," said Dr. David Wax, Ava's pediatric cardiologist at Lurie Children's Hospital. "And there’s not honestly an exact date on that or a time, but it’s a grave prognosis."
'That's When I Lost It'
Sending a little girl off to kindergarten is a milestone.
There are new clothes to buy, school supplies to gather, errands to run.
So when Young Walczak brought Ava to the dentist for a checkup before the start of this school year, she didn’t expect another major setback. Three years had passed since any surgeries, a small victory.
But the dentist told Young Walczak that Ava’s surgeries had stripped the enamel off the girl’s teeth, leaving behind damaged teeth and bacteria that posed a risk to her already weak heart.
Just last month, Ava — with seven of her teeth removed after a lengthy oral surgery — went into another operation where doctors tried to “balloon" the arteries in an effort to open them up and relieve some pressure.
Ava’s body responded poorly.
As she lay intubated in the intensive care unit that night, Wax made his way to the waiting room to seek out her parents.
“That’s when reality set in, when they tell you they only want to speak to the parents,” Young Walczak said.
Ava was critically ill, the doctor told them. She'd been vomiting blood, which appeared in her breathing tube, and her lungs filled with fluid. Her little body swelled up.
Family and friends began to arrive, fearing the worst. Young Walczak summoned her parents to the hospital. The family overtook the waiting room.
Young Walczak and her husband, a utility worker at a suburban power company, retreated to a small side room together to gather themselves, then made their way up to Ava's room.
“That’s when I lost it,” Young Walczak said.
Looks Like 'Suffering'
The survival odds for some child heart and lung transplant patients is "generally quite poor,” Wax said, and the family has ruled it out an an option.
Now, they’re left with a number of choices.
One is subjecting Ava to more of the artery-ballooning procedures, roughly every three months.
“In theory, that’s your best chance to make a difference,” Wax said.
But Young Walczak said the October operation “looks like suffering” and she doesn’t want Ava to go through that again.
Recently, the family sent Ava’s medical history to a renowned heart specialist at a West Coast university, hoping a medical team there would take up her case, but it's unclear whether they’d be able to help at all.
Meanwhile, Young Walczak said her mother has cautioned her against seeking out any sort of experimental surgery.
"She says, 'Don't do something where you're going to lose her on the table.' But I feel like if I don’t try something different, if [a doctor] says, 'Let me try to go in and do something,' and I do lose her, then at least I know I tried," she said.
The Heart Works Harder
Ava has bounced back from the October surgery. She's a few months into kindergarten at a Catholic school in Bridgeport.
She can suit up for gym class, but instead of allowing her to run around with other kids, teachers send Ava on special projects, like making copies.
When she's tired, she rests.
Sitting at the kitchen table of her Bridgeport home, Young Walczak said she’s finally beginning to accept her daughter’s dire condition. She's made an appointment in January for another ballooning of the arteries, hoping this time it'll be a little less hellish.
But it seems that reality and hope are competing against one another — Ava is only getting bigger and her heart is only working harder.