The Poire family - five people plus another on the way - isn't sure where they'll be living next month when school starts.
They haven't had a permanent home since January 2008 when, unable to pay their mortgage, they lost their home. A year later, owing nearly $400,000 to more than 50 creditors, they filed for Chapter 7 bankruptcy.
As parents of a sick child, parents Nicholas, 30, and Desiree, 28, are taking life day by day.
Their daughter's heart defect is rare, but the impact on the family is not: Sixty-two percent of all bankruptcies are triggered by medical expenses, says a study published last year in the American Journal of Medicine.
"People seem to think that something like this unifies people, but I don't think folks understand just how stressful it is and how stress can wreak havoc with families," said Dr. Andreas Theodorou, chief of pediatric critical-care medicine at University Medical Center in Tucson.
"A lot of the burden is carried by the parents," Theodorou said. "Because these are children, many of these families are relatively young and haven't been in the work force long. Many are just getting started with their careers."
Health problems surface
In 2005, the Poire family was living in Willcox and had just purchased their first home together.
Nicholas and Desiree - who had met as teens cruising down Speedway in Tucson - had each just bought a new car. Desiree worked as a laboratory technician and Nicholas was an officer with the Willcox Police Department.
But everything changed when Desiree was nearly seven months pregnant with their third child, a girl. Desiree went into pre-term labor and ended up at Tucson Medical Center.
There, doctors were able to stop the labor. But they discovered a problem two previous ultrasounds had missed: The left ventricle of the baby's heart was not developing properly. They diagnosed her with hypoplastic left-heart syndrome - a fatal disease if untreated.
"I remember being in the hospital at that time and Nick and I asked everyone to leave. We just cried and talked," Desiree said.
When Trinity was born in December 2005, the family had three options. They could do nothing, and Trinity would most likely die within a month. They could wait for her to get a heart transplant, but a lot of babies die waiting for one.
The third option, the one they chose, was for Trinity to have three different open-heart surgeries to help the right ventricle of her heart pump blood into both the lungs and the body.
First surgery at 3 days old
Trinity had her first surgery at 3 days old, at Phoenix Children's Hospital. The surgeon was Dr. Michael F. Teodori, a renowned specialist in highly complex heart problems in newborns and children. He now works at UMC in Tucson.
Teodori, director of congenital and pediatric cardiac surgery at UMC, typically sees 15 to 20 cases of hypoplastic left-heart syndrome per year. It's difficult to predict a long-term outcome for them, he said. Because they don't get normal oxygen to the brain, about a third of babies with the condition have abnormal brain development with some degree of developmental delay and disability, he said.
Trinity's development has clearly been delayed, but her parents aren't certain how much. At 17 or 18 she may need a heart transplant.
"She'll never have the reserve of someone with a normal heart," Dr. Teodori said. "There's not as much ability to fight infection as someone with a normal heart."
Treatments for the condition were not successful until the 1980s and as a result, there are few people older than 20 years old living with it, he said.
Doctor visits don't faze her
Now 4, Trinity is as accustomed to needles and IV lines as she is to sippy cups and naptime. Her latest surgery on May 20 took eight hours and resulted in a 33-day hospital stay.
She doesn't balk at going to the hospital or seeing doctors. She likes to help the doctors when she can, whether it's pulling out stitches or applying pressure while her blood is drawn. Smiling, she likes to show off her scar, which reached from her breastbone to just above her belly button. There are six other small scars around it.
She's not allowed to run like her older brother and sister and until her latest surgery, her breathing was in audible wheezes, her speech in little gasps.
Trinity remains friendly and outgoing, a smile her standard facial expression. On one visit she offered a guest crayons and a coloring book. On another occasion, she offered to share the toys in her Littlest Pet Shop set.
Family makes sacrifices
Trinity's family has not endured her physical trauma, but they've all sacrificed in other ways.
A month after she was born, it became clear they would have to leave Willcox.
"The elevation wasn't good for her," Nicholas said. "We didn't want to risk it."
They also needed to be closer to the specialized cardiologists in Tucson. So the family, which also includes Brennen, 5, and Natalie, 8, moved to Tucson. Desiree got a job as a medical assistant in Oro Valley. Nicholas couldn't find a Tucson job in law enforcement and took work as a warehouse manager.
And then Desiree quit her job to be with Trinity.
"She can't go to day care," Desiree said. "The doctors don't think it's a good idea. When she gets sick, she gets really sick."
The Poires began a downward spiral. There were brief periods when Nicholas was between jobs and the family was without health insurance. One carrier enrolled everyone in the family except for Trinity. A $10,000 hospital bill came in. Other medical bills followed.
"We were paying our mortgage with our credit cards. It was insane," Desiree said.
To ensure Trinity would have health insurance, Nicholas joined the U.S. Navy Reserves in May 2008, shortly after the family lost their home. By being part of the U.S. military, the family now qualifies for Tricare Reserve Select health insurance at a cost of $197 per month. Then came the bankruptcy, and the family spent time living with relatives and friends.
"I used to wonder how families could possibly file for bankruptcy. I never knew …"
Phase 3 of treatment
Nicholas joined Roswell police in New Mexico in May of 2009, but the family moved back to Tucson and into Desiree's mother's house for the third phase of Trinity's surgery in May. Nicholas, just promoted to motorcycle officer, is on unpaid family leave.
Desiree, six months into a surprise pregnancy, has been diagnosed with multiple sclerosis, though at this point she hasn't suffered any serious effects.
Brennen and Natalie have been to three schools in four years. The family has moved seven times since leaving Willcox in 2006. When Trinity was in the hospital, the other two kids stayed with friends and relatives while their parents slept at the hospital.
Desiree says there are days when she feels life is surreal. It's impossible to look forward.
"We have a lot of questions about where our lives are going to go, and I don't have an answer to them," she said. "Now, all that matters is that Trinity is here."
Contact reporter Stephanie Innes at firstname.lastname@example.org or 573-4134.