Nevaeh Sweeney's parents brought their baby daughter from rural Northern California to Sacramento last October to find out why she wasn't gaining weight. They could not have known she would spend five months fighting for her life in the UC Davis Children's Hospital Pediatric Intensive Care Unit (PICU).
"It was shocking," Nevaeh's father, Michael, says of the harrowing experience. "I thought we were going down for a routine thing – and it turned into a one in five chance that she'd live."
Journey of a lifetime
The true journey of a lifetime for Nevaeh began when, after the 500-mile drive from Cedarville in Modoc County and admission to a Sacramento-area community hospital, she went "code-blue" while being readied for the ambulance ride to UC Davis.
The 4-month-old had a seizure and went into respiratory arrest.
"She looked blue and felt cold to the touch," recalls her mother, Priscilla Archuleta. "She was just very helpless and there was nothing we could do."
That's when pediatric intensivist Melissa Evans stepped in, consulting with the community physicians via telephone as they inserted a breathing tube in the tiny infant to stabilize her enough for the ambulance ride to UC Davis.
"Our transport team had a very difficult time since she was never really stable at any point during transport," Evans says. "They did a phenomenal job getting her here alive."
At UC Davis, Evans and a team that included several nurses, a cardiologist and a pediatric heart surgeon immediately placed Nevaeh on extra-corporeal life support (ECLS). The machine oxygenates the blood, doing the work of a damaged heart or lungs.
"She would have died within a very short period if we had not placed her on ECLS," Evans says. "She was lucky to have been so close to UC Davis at the time her condition worsened."
Tests eventually would show that a piece of tissue had grown into one of the chambers of Nevaeh's tiny heart, obstructing the flow of blood from her lungs. She would spend three months recovering in the PICU from a six-hour-long, life-saving operation by pediatric heart surgeon Gary Raff.
"We had to stay strong and positive," Archuleta says. "I love that PICU – they saved my daughter's life."
The long haul
Roseville kindergarten teacher Gina Dyke shares Archuleta's sentiment.
Heart surgeon Raff has performed four complex surgeries on her son Casey, now 4, who each time was admitted to the PICU afterward. Dyke estimates Casey has spent a year in the PICU recovering from his heart surgeries and several other health problems.
Unlike the Sweeneys, pre-natal testing told Gina Dyke and her husband Michael that Casey would need a series of operations to correct a heart defect. A crucial valve was missing from his heart, inhibiting it from circulating oxygen-rich blood to his body.
But Casey's body required the procedures sooner than expected, creating a series of crises for Casey, his parents, pediatric intensivists like Stephanie Mateev and Robert Pretzlaff and heart surgeon Raff.
The first procedure was performed in January 2005, just days after Casey's birth. The second operation happened right in his room in the PICU while he was recovering from the first procedure. The little boy was connected to so many machines while he healed that there was no room for his parents to sit at his bedside.
"We literally didn't know if he was going to make it, and we were scared to ask," Dyke says. "All you're thinking is 'he has to live.'"
On the mend
Nevaeh Sweeney is almost walking now and, though she needs 13 medications each day, her parents say she is a happy baby girl. They make a monthly six-hour trip from Cedarville to UC Davis for follow-up visits with pediatric cardiologist Michael Choy.
Casey is doing well, too, and though occasional nosebleeds and colds raise concerns for his parents, his energy level has improved enough for Casey to attend his first sports camp this year.
"He's never really been able to do those things before," Dyke says. "It's amazing that a boy born with the odds against him can go on to have such a normal life. I'm extremely grateful for what UC Davis has done for him."
Dyke says Casey recently participated in a benefit for UC Davis Children's Hospital at Blue Oaks School in Roseville where his mother works, proudly showing the scars from his operations to a deeply moved audience.