Little Baby Makes a Big Comeback From Illness

So many old needle marks cover Juliana Azzara’s tiny torso that her bikini-wearing days are doomed before they’ve even begun. But who cares? The bouncing baby girl with the big brown eyes will be a knockout when she hits the beach, even if she wears a potato sack.

Although Juliana, who will be 1 on Thursday, now generously doles out smiles and hugs to family members and strangers, not long ago she was so traumatized that she could not tolerate bright lights and needed constant cuddling.

Doctors do not know the reason, but either at birth or immediately afterward, Juliana, who was born prematurely, developed a paralyzed diaphragm and a hole in her stomach. She had to fight for her every breath. Occasionally, she would go into respiratory failure and have to be revived. The effort of breathing caused so much pain that she would turn chalky gray.

“Juliana was in very bad shape,” said her mother, Sheila Azzara of Fountain Valley.

Her doctor agreed. “Juliana was critically ill,” said Dr. Ralph Rucker, who, as a specialist in treating critically ill newborns at Childrens Hospital in Orange, was Juliana’s primary care physician. “We don’t know how she got a paralyzed diaphragm. It could have been from a birth injury or from several unknown causes.”

Juliana’s condition was rare, he said. He has seen only five to seven cases of paralyzed diaphragms in the last dozen years at the hospital.

So many tubes, needles and machine apparatus were connected to the 5-pound, 1-ounce baby girl that when her mother was permitted to hold her three days after her birth, she was afraid to. “It felt so good holding her, but she was attached to so many tubes and monitors that I trembled. I was afraid I would disturb something.”

After two operations and nearly a year of treatment, however, Juliana has been pronounced “perfect.” “She’s a beautiful child, and we are very pleased with her outcome,” Rucker said.

On Saturday, Juliana, who is nicknamed “the Nose” by her family because of her unflagging inquisitiveness, joined more than 1,000 other premature and formerly critically ill children and their families in a celebration in the cafeteria at St. Joseph Hospital in Orange. The 11th annual party, co-sponsored by Childrens Hospital’s Parent-to-Parent support group and Mead Johnson, a medical supply company, was a celebration of lives that almost never were.

It was a celebration of children who beat the odds to demonstrate the strong stuff they are made of. And it was a celebration of the medical teams and advanced technology that helped these children enjoy the gift of life.

“There has been tremendous progress in understanding and treating newborn illness,” said Rucker. “Over the last 10 years, there have been tremendous advances in things such as heart surgery and in the prevention of premature births.”

Juliana, the fourth child of Sheila and Philip Azzara, was born five weeks early in another Orange County hospital and immediately went into respiratory failure. “She made these loud gasping noises that were just heartbreaking. Hard as she tried, she just couldn’t breathe,” her mother said.

Juliana had surgery to repair the hole in her stomach when she was 4 days old, but her breathing problems continued. She had to be monitored every second of the day in case she went into respiratory failure, Azzara said.

Because her parents were not happy with the hospital where she was staying, she was transferred to Childrens Hospital at the age of 4 weeks. “She had lost more than a pound,” said her mother. “She was working so hard just to breathe that she was burning up calories.”

There, after numerous tests, doctors determined that she couldn’t breathe because her diaphragm was paralyzed. By that time, Juliana had sustained so many needle prickings, especially on the heel of her foot, where blood samples were taken, that if someone merely touched it she would let out a howl.

Juliana’s brown hair was shaved and intravenous needles inserted directly into her scalp as doctors tried to determine what was wrong.

She finally underwent a successful surgical procedure, relieving the pressure on her diaphragm, when she was 6 weeks old. Although it cured the breathing problems and she went home two weeks later, she was not totally out of the woods.

She had to be hooked up to a heart and respiratory monitor for the next three months and was a very irritable child as a result of her hospital experience, her mother said. “She needed lots and lots of holding, even more than most babies. I held her so much that I developed a pinched nerve in my neck.”

Juliana’s doctors also prescribed a calm, quiet environment. “But with three other kids in the house, that was not the easiest thing to do,” Azzara said.

The illness of one family member can, and usually does, disrupt the entire family structure, Azzara learned. “Having a newborn who is critically ill is a gut-wrenching experience. It is like being on a roller coaster. On her good days, we were so happy; then there would be a setback.”

Sheila Azzara, 34, has never worked outside the home (she and her husband, Philip, 40, own a restaurant). She was always there when her three older children, ages 6, 10 and 12, needed her. “But all that had changed when Juliana was born. Suddenly I was never there anymore. After school, the children went to a neighbor’s house. When I was home, I was emotionally drained. I couldn’t do anything but sit and think, ‘My baby is sick.’ ”

Azzara is grateful that she and her husband did not have to worry about Juliana’s $200,000 hospital bill because it was covered by their health insurance.

Azzara said that although friends tried to be supportive, they were often uneasy and didn’t know how to handle the situation. But she understands. “During the time Juliana was sick, I could not eat, and when I did get to sleep, I would have terrible dreams,” she said, adding that in a way, she was almost afraid to give all of her love to her daughter because she could not have coped if Juliana died.

Azzara still does not get much sleep, but only because she is busy trying to keep up with her healthy, happy daughter. Juliana now weighs nearly 17 pounds and is adored by her family.

“She is a perfect, beautiful child,” said her doctor.

Added her mother: “She’s full of the dickens.”