A Life Taken, a Life in the Balance

The parents of Cecelia Guerra hung four red stockings on the metal bars at the end of her tot-sized hospital bed. They put a small tree laden with angel ornaments on the bedside table, partially hiding the blinking monitors measuring her vital signs. And they placed a green velvet jumper over the 2 1/2-month-old girl, carefully lifting the tangle of tubes keeping her alive while she waits for a new heart at a hospital in Hollywood.

“Merry Christmas, sweetheart,” whispered her mother, Lisa Guerra, 25, stroking the infant’s hand Thursday morning in the pediatric intensive care unit.

Cecelia has hypoplastic left heart syndrome. A pumping chamber did not form properly, making it difficult for her body to get enough blood.

The Fontana infant is at the top of Loma Linda University Medical Center’s heart transplant list. Her father, Jesse, keeps one hand near a pager, waiting for it to go off, signaling that a tiny heart has become available somewhere.

“That’s all she wants,” the 27-year-old father said. “She asked Santa to bring her a new heart.”

The Guerras know the odds their critically ill daughter faces. Most babies in her condition can live only three or four months without a transplant. About one in five die waiting for one. One of those was Jasmine Torres of Pico Rivera, who died this fall after spending a month at the top of the Southern California transplant list without getting a heart.

Cecelia also has a blood type--O negative--that makes it more difficult than usual to find a donor. And around Thanksgiving, she caught a respiratory virus that caused a lung infection, which has lingered ever since. She has remained sedated for weeks, hooked up to life support and a respirator.

Her parents slept in the hospital room overnight Wednesday so they could be with Cecelia first thing Christmas morning. The girl’s middle name is Angelica and at least 100 angel dolls and stuffed animals fill the room, sent by family and friends. Some rest on her small bed, while others line shelves along the walls.

The Guerras, who wear small wings pinned to their clothes, explained to their three other children that opening presents would have to wait. Jesse, Raymond and Andrea, who range in age from 5 to 7, saw their sister when she was in the regular hospital nursery. But they are not allowed in the ICU because young children too often carry contagious illnesses.

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The couple was told when Lisa was seven months pregnant that their daughter would need a new heart. They held out hope that some miracle would change what the doctors saw on the ultrasound. But the reality set in when Cecelia was born.

“I couldn’t handle it when I saw her for the first time,” Jesse said. “Here was this beautiful little girl, and she could go at any minute.”

Lisa quit her job as a clerk so she could stay with Cecelia full-time in the hospital. Jesse began working overtime at his steel warehouse job in Rancho Cucamonga, while logging three-hour round-trip drives between the hospital and work.

They rarely make it home to Fontana. Jesse’s 19-year-old brother Anthony takes care of the couple’s two sons, packing their school lunches and making sure they do their homework. Daughter Andrea, 7, stays with her grandmother.

Raymond, who had been the family baby, doesn’t understand the upheaval, his parents said. “You love Cecelia more than you love me,” he said when they came home from the hospital one day.

Later, though, he sent one of his favorite Power Ranger figurines to his new sister.

In the hospital, the mood of the parents fluctuates from optimism to panic when Cecelia’s lung infection worsens or she reacts badly to a new medicine. Lisa keeps a close watch on the flashing monitors, jumping to check the machines when they beep.

She also keeps detailed records of her daughter’s life.

Under the section “Birthdays” in Cecelia’s baby book, Lisa lists every week and month her daughter survives. Under “Record of Childhood Illnesses,” she carefully logs each new infection and symptom. The page is full.

“Every day I tell her, ‘Mommy’s here,’ ” Lisa said. “She knows I’m here and that I love her very much.”

She takes a picture of her daughter once a day. Five photo albums are bursting with the photos and letters, cards and newspaper clippings about other babies who needed heart transplants.

The Guerras talk of when they find a new heart--not if.

“I can feel it,” Jesse said. “My little girl is going to be OK.”

For every kiss they give Cecelia, they put a quarter in a bulging piggy bank.

“It’s for her wedding and college,” her father said.

Like other parents in their position, the Guerras have had to come to terms with the fact that their daughter will only live if another child dies.

“It hit me when I was driving home one night and praying for a new heart,” Lisa said. “I asked myself, ‘Am I praying for a child to die?’ But then I talked to my priest and realized, no. I’m not praying for that. I’m praying for another family to understand how important it is to be a donor.”

A hospital Santa visited earlier in the week. Thursday morning, the couple put a photo of him with Cecilia at the top of her bed. Then they opened her presents--some Barbie dolls from the nurses and angel-shaped bells from her uncle.

They went home about 7:30 p.m. The other children had waited all day for Christmas dinner--and to open their gifts.

Though Jesse Guerra had his beeper, it never went off.

But although Christmas didn’t bring a new heart, it did usher in what passes for good news under such circumstances. Cecelia seemed to be doing a little better than the day before.

“This,” her mother said, “is my Christmas present.”