'Miracle' Child Is Finally Going Home

December 19, 1993|By Angela Winter Ney | Angela Winter Ney,Staff writer

Angela Fontz wanted a child so badly that she made a deal with God: Give me a baby and I'll accept whatever else happens.

When her daughter was born nine years ago with two broken legs, a broken arm, several broken ribs and a fractured skull from a rare genetic disorder that makes her bones brittle, Ms. Fontz didn't waver.

"I was this airhead kid when I had Samantha," she says. "I grew up the moment the nurse put her in my arms."

Doctors said the baby would die. Most children with this severe a form of osteogenesis imperfecta, or OI, die in infancy or childhood.

But after three years in and out of various hospitals and six years as a permanent resident of the Mount Washington Pediatric Hospital, Samantha Battaglia is coming home this week to her grandparents' Brooklyn Park house, where her mother lives. She has defied experts' predictions simply by living.

When Samantha was 6 months old, physicians told her mother it was time to take the baby off life support systems and let her die, Ms. Fontz says.

"I said, the good Lord will know when it's time to take her. Until then, nobody touches her," she says. "I told the doctors, 'I have more faith than you. I'll invite you to her fifth birthday party.' And I did. We had a big party."

Many times, doctors and her mother thought Samantha was about to die. "Part of her OI is a dwarfing syndrome," explains Stephen Metz, her attending physician at Mount Washington. "All her bones are short, but her chest cavity is especially small, which makes it hard for her to breathe."

When Samantha was 5 and her condition worsened, Ms. Fontz admitted the odds by asking the community to help raise money for her daughter's funeral. Community fund-raisers brought in more than $25,000, Ms. Fontz says, so she could provide a white casket on a carriage pulled by six white horses.

The funds haven't been needed.

"Sam is as happy as any normal child in any normal environment," says Theresa Maggitti, her primary nurse. "She's spunky and cheerful."

"She's never had a mean, nasty day," says her mother. "She's the happiest little soul. She's a miracle."

But the miracle isn't all kind. Samantha's life will never come close to "normal." The child, who will be 9 in January, looks like a deformed toddler with an unusually large head. She will never breathe on her own, walk or live a regular life.

Samantha cannot breathe without a ventilator, attached to her through a tracheostomy tube in her throat. Her legs and arms are bowed, and her fingers bend only partially. She has the mental capacity of a 4- or 5-year-old, her mother says.

She must speak around the breathing tube, and it's often hard to understand her. Any illness quickly becomes life-threatening.

On the positive side, Samantha can eat normally and can sit up for meals. She chooses her clothes each morning and loves to tease nurses and health care workers.

"If you want to know what's going on in the unit, ask Sam," says Ms. Maggitti. "She knows everything; she's a gossip."

In an electric wheelchair she maneuvers with one hand, the child travels around the hospital floor. Unit clerks give her papers to take to different departments and she receives a "paycheck" along with regular workers. She has a "license" and has received tickets for bad driving.

"Home for her is the hospital," says Ms. Maggitti. "She's lived here so long, she understands that bedroom and that room as home. It's all she can remember."

Samantha's mother has made her life as much like a fairy tale as possible, bringing in cartoon characters, providing pizza picnics on the hospital floor and Christmas parties, with Santa bringing gifts for all the children.

But the child also knows she's going to die, her mother says.

"One nurse told her when she sees Jesus, she'll be whole and have no pain. I've tried to make her not feel bad and be happy with herself," Ms. Fontz says.

Dr. Metz said it is impossible to predict how long Samantha will live; some people with forms of her condition live to adulthood, but her breathing problem exacerbates her difficulties.

Throughout the years, says Ms. Fontz, "a lot of people think I should've let her die. People said, 'Just have her cremated and forget it.' People think I'm wrong. I really don't care."

Had she agreed to terminate Samantha's life by removing life support, she says, "I would've lost those nine years that nobody knew we could have."

Her mother's stubbornness has kept the child alive, says Samantha's grandmother, Sherry Watson. "Angela fought every day for her," Mrs. Watson says.

The ability to focus on a goal -- Samantha -- was an achievement for Ms. Fontz, her mother says.

As a troubled teen-ager, Ms. Fontz experienced a hysterical pregnancy and suffered from dyslexia. Nonetheless, she has taught herself to give Samantha IVs and change her tracheostomy tube, a procedure that must be performed in seconds because Samantha cannot breathe when the tube is removed. She has spoken at hospital seminars. She visits her daughter every day in the hospital.

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