On six separate occasions this past summer, Tonya Rerecich struggled to accept that her 11-year-old daughter was going to die.
Addison "Addie" Rerecich was so ill and her young lungs so damaged that she spent more than three months hooked up to an external lung that breathed for her. The head of pediatric intensive care at the Diamond Children's Medical Center, where Addie has been hospitalized for the past four months, says in his 20 years of practicing medicine, he's never had a patient hooked up to the external lung life support system for so long.
An aggressive bacterial infection had wreaked so much havoc on Addie's body that as much as doctors continued to try, they all came to the same conclusion: No amount of surgery or medicine would ever repair the tall, previously athletic girl's lungs. A double-lung transplant would be her only hope.
"She was really failing. There were huge holes in her lungs and she was so sick. She was hallucinating. And she saw a guardian angel," said Tonya, who herself is a registered nurse.
What happened next is what her family and some of the medical staff at Diamond Children's classify in varying terms as rare, fortunate and remarkable.
"I do believe in miracles and even though Addie has a long way to go, she has definitely been a miracle to get as far as she has," said Dr. Andreas Theodorou, chief of pediatric critical care at Diamond Children's, which is part of the University of Arizona Medical Center-University Campus.
"There were several times throughout her care that it looked like she wasn't going to make it. She has an amazing family. Her mom is a strong advocate and has been fighting, along with her dad, every single day. And I emphasize she has a long way to go. But with her family supporting her and working with the entire medical team, we're at least in the battle."
When doctors determined that Addie's lungs could never be repaired enough for her to have any sort of a normal life, one remote hope remained - for Addie to get a double-lung transplant. But there were so many odds stacked against the sick, young girl. Being on the external lung, which medical personnel call ECMO (extracorporeal membrane oxygenation), increases the risk of bleeding because the ECMO circuit makes it more difficult for the blood to clot.
"Do you know how many times I was told she was not a candidate for a lung transplant?" Tonya said last week.
After four months of keeping vigil at her daughter's bedside along with husband Lawrence, an engineer, Tonya said she could not let their daughter go without a fight. And Addie had been fighting hard all summer, ever since she first complained to her mother about a sore hip back in May. That soreness turned out to be a brutal staph infection that wasn't externally visible and moved quickly through Addie's body, causing a rare inflammatory response that left her fighting for her life in the intensive-care unit.
It's not clear why Addie's body had such a violent reaction to the infection. But it was clear by mid-August that her own lungs were too damaged to sustain life.
"I went on the Internet at 3 a.m. and started researching transplants. It's possible on ECMO. I started beating the bushes and I knew Dr. Michael J. Moulton was the guy," Tonya said. "I knew I had to get to him somehow. I felt like if he could come and meet her and see the life in this child - all these months and nothing was wrong, except for her lungs. Her heart, kidney, brain … she'd come through a war covered in scars but intact."
Moulton, the surgical director of lung transplantation at the UA Medical Center-University Campus, agreed to see Addie. Tonya tried not to get her hopes up.
"He could have so easily said, 'I understand the situation, but a transplant would be a death sentence.' I was prepared to hear that," Tonya said. "But he said, 'I think I can help her. Let's get her listed.' "
And in an instant Addie was placed on a waiting list for a double-lung transplant. Due to the fact that she was younger than 12 and that she had no other options for survival, she was placed high on the waiting list. But even her doctors were surprised when lungs became available within three weeks of putting her on the list. On Sept. 8, Moulton and his team performed a seven-hour surgery on Addie and gave her a new set of lungs.
"The challenges that a case like this brings to a lung transplant surgeon or to a cardiothoracic surgeon are as challenging as I've seen in my career. There's no doubt about that," Moulton said.
About half of patients who get a double-lung transplant will have some degree of chronic rejection after five years, Moulton said. But in other patients, the transplant can last 10 years or longer. Also, the program at the UA Medical Center has had success with doing second lung transplants on patients.
"Our goal here is to have a child who can go back to school and go back to doing everything a child wants to do," Moulton said. "Her brain function is intact and she's working hard on things like strengthening her arms and stretching - all things that are tough for a little girl who was bedridden for four months."
Addie's left arm is stiff and sore from being in bed for so long. She suffered a small stroke and is having problems with her right pupil. She's still on a ventilator to help her breathe, but she's being slowly weaned off. And it's painful for her to start breathing on her own again, since she'd been helped by the ECMO for so long.
On Friday, she put on regular clothes for the first time since she became ill and sat up in a chair. Though she held back tears as a respiratory therapist removed her ventilator as part of her daily therapy, she brightened up at the mention of her birthday. She turns 12 on Saturday. When asked what she'd like to do, she strained to speak, but got the words out in a clear whisper.
• Tonya Rerecich's Facebook page about her daughter: www.facebook.com/event.php?eid=104011076357295
Tonya and Lawrence Rerecich are not working while they remain at their daughter's side. Donations to help them with household expenses may be made to the Addison Rerecich Donation Account at any U.S. Wells Fargo or Wachovia bank, account number 9894037671.
A PayPal donation site is at go.azstarnet.com/addison
Contact reporter Stephanie Innes at email@example.com or 573-4134.