MEDICAL MYSTERY

Tiny Billings girl thrives on her family's love

2011-05-22T00:00:00Z 2011-12-27T15:25:53Z Tiny Billings girl thrives on her family's love

Story By DONNA HEALY Of The Gazette Staff‌

The Billings Gazette

At age 6, Gabrielle Mary Williams fits comfortably in an infant car seat.

She weighs just 10 pounds.

The Billings girl’s braided blonde-brown hair hangs below her shoulder blades. Her fingernails are done in a bright red polish, and she wears a newborn’s footed sleeper.

Nearly blind, unable to speak or sit up or crawl, she’s fed infant formula from a squeeze bottle every three hours during the day. Medication helps control her seizures. The simple act of digestion can cause her pain because her bowels and bladder do not work properly.

At birth, she was a medical mystery.

Six years later, despite a parade of medical specialists and extensive genetic testing to rule out chromosomal abnormalities, her condition remains equally mysterious.

“The things that grow on Gabby are her hair, her teeth and her fingernails. That’s about it,” said her father, John Williams.

But he and his wife, Mary Margret, cherish their daughter for who she is, knowing she is perfectly fine in the one way that matters: She’s able to give and receive love.

She is an integral part of the Williams family, a family that includes four children under the age of 8 plus a baby born in March.

Gabby is comforted by the voices of her parents and siblings, although she may not understand their words. She reacts to sunlight on her face and soothing classical music. She’s cranky

when she’s put down and can scream inconsolably when she’s distressed.

Her parents talk to her while they dress and feed her, hold her when she fusses and involve her in whatever the family does.

Researchers are sequencing her DNA in hopes that her extremely rare condition can offer clues to the mechanics of aging. Richard Walker, the Florida Ph.D. leading the research, knows of only one other similar case, a Maryland teen the size of a baby.

In mid-January, Gabby and her family appeared on a television documentary on The Learning Channel focused on Walker’s research.

Whether or not those scientific efforts prove fruitful, her presence has touched lives.

In public, Gabby attracts attention. When she and her baby sister ride in a pair of infant carriers, some people assume they’re twins.

People see a baby with really long hair, and it sparks their curiosity, said Asia Bingham, a close family friend.

“When you say she’s 6, they want to know what’s wrong with her,” Bingham said.

Sometimes, Mary Margret tells them, “She’s our little angel.”

Accepting Gabby

At birth, Gabby wasn’t breathing and had pronounced physical abnormalities. Although she was only a week premature, she weighed 4 pounds, 14 ounces. Their pastor at St. Bernard Catholic Church baptized her in the neonatal intensive care unit, where Gabby spent the first 40 days of her life. When they took her home, doctors didn’t expect her to live.

“I know there were times in the dark of night when I thought, ‘What are we going to do? We can’t do it,’ ” Mary Margret said.

At first, specialists did many tests to rule out known abnormalities. Everybody was looking for an answer, Bingham said. Eventually, the Williamses realized they needed to accept Gabby for who she was.

“This child was blessed to receive this family,” said Dr. Janis Langohr, the family’s pediatrician.

“I’m not sure there’s anyone, anyone else that could do this and just incorporate this child into their lives and just do it so beautifully.”

“This would be a devastating situation in many, many families. They have come to terms with it, and they’ve certainly incorporated Gabby into their everyday lives and they’ve gone on to have three more healthy children. They’re just remarkable in their spirit and how they handled it,” Langohr said.

At a weekday gathering of preschoolers at St. Bernard, Mary Margret held Gabby and gently patted her back while she talked to the other moms. Although Gabby is comforted by her mother’s voice, she’s most responsive to touch.

“She’ll fuss and fuss until she gets what she needs, and then she’ll settle down and she’ll snuggle and just be comforted. She’ll coo at you sometimes, too,” Mary Margret said.

When Gabby is distressed, her body stiffens, her back arches and she screams.

Unlike a baby, she’s all muscle.

“She’s got the soul of a tiger or something,” John said.

“She’s got just a little baby body, but she’s tough. She’s been through colds that we’ve thought were going to take her down. A couple years ago, on Christmas Eve, we thought she was dying. We were talking about hospice at one point.”

To deal with chronic ear infections, Gabby has had four surgeries to place and replace tubes in her ears. During the second surgery, her heart stopped. She was revived by a shot.

As in other families, the Williamses’ other children zip from school and church to Little League and T-ball.

John, who works for the government, has arranged his schedule to work four 10-hour days. Mary Margret works from home, as the office manager for a medical practice. One day a week, John stays home with the children while she goes to the office.

“Mary Margret is a Wonder Woman,” Bingham said. “I don’t know how she does as much as she does.”

Outsiders don’t see the hard times, Bingham said.

“It takes its toll on them both, but they hold it together so well that I don’t ever see it being an issue,” she said.

Since Gabby’s too medically frail to go to school, a special-needs teacher’s aide comes to the Williamses’ home for an hour once a week.

The aide, Leslie Owen, whispered a soft “Good morning Miss Gabby” to wake the girl from her infant swing.

“I try to let her know what I’m going to do before I do it,” Owen said.

One of Owen’s goals is to get Gabby to look when her name is called. After talking to her for a moment, Owen rubbed scented lotion on Gabby’s hands.

“She kind of knows who I am by the smell and the feel,” Owen said.

Later, Owen stretched Gabby’s tiny fingers over a vibrating toy to try to get her to reach for an object and to hold it in her normally clenched fists.

As Gabby lay on the carpet in the family room, Owen tried to get Gabby to track a lighted toy with her eyes as it moved across her field of vision. Although Gabby has cortical blindness, she seems to be able to discern light and shadows.

“My job is to kind of stimulate her,” Owen said.

Because Gabby cannot say what she likes or dislikes, Owen usually brings a bag full of toys and other objects.

She’s a mystery,” Owen said. “There’s so much we don’t know about her yet.”

Family outings

On a blustery Sunday morning in early April, the Williams family headed to their friends’ hobby farm outside Billings to see the baby chicks and other exotic animals.

While 7-year-old Sophia, 4-year-old Anthony and 3-year-old Aleena combed the hen house for newly laid eggs, Gabby lay in one car seat carrier while newborn Myah lay in another. John held Gabby’s hand and stroked it against the soft, fur-like black feathers of one of the exotic chickens as he talked to her about the pretty birds.

On a trip to pick out Easter dresses, Gabby and her 2-week old baby sister rode in car seats snapped to a sturdy twin baby carriage. Aleena rode on the carriage’s sun shade as John negotiated the stroller through the narrow racks of children’s clothing in a mall department store.

Along with shopping for Easter dresses, Sophia and Mary Margret scanned the rack of snow-white First Communion dresses.

The shopping trip was sandwiched between an afterschool stop at the mall’s play area — where Gabby took a bottle and Myah nursed — and a stop for supper at the food court. Instead of appearing rushed, the whole family seemed playfully immersed in the shopping expedition, offering opinions as the girls donned outfits in the glossy pink dressing room.

When Anthony’s patience ran thin, his father crouched down to offer a good-natured pep talk.

“Anthony, I told you. You just have to get in your zone when the ladies are shopping,” John said.

Friends marvel at the way the Williamses function as a family.

“They turn everything — even riding an elevator — into a learning experience for the children,” said Bingham, who thinks of herself as “Auntie Asia.”

Becki Wald, a neighbor and family friend, admires the couple’s parenting skills.

“They are able to just throw themselves into each child, with not one being left out. They’re a team. You kind of have to be when you have something like this in your life,” she said.

John, 47, and Mary Margret, who is 10 years younger, both wanted a large family. They have been married nearly nine years and have known each other as friends for 19 years.

After Gabby was born, they were advised that they had a one-in-four chance of having another baby with birth defects. Their son, Anthony, was born two years after Gabby.

“It was a scary pregnancy, a long nine months coming,” Mary Margret said.

Few answers, a lot of faith

The couple welcomed the efforts of medical researchers in unraveling the genetic mystery of Gabby’s condition. They hope that it will provide some answers, not only for science, but for their family.

“We’re at the point, if there’s an answer out there, we want to know it for our children, when they have children,” John said. “Is this something they can pass on to their children?”

Since Gabby’s chromosomes appear normal, researchers at a Duke University lab are searching for the damaged gene or genes within those chromosomes, Walker said.

Through the DNA sequencing, which took two months, researchers have identified 800 variants in comparison to the Human Genome Project, said Walker, who is retired from the College of Medicine at the University of South Florida and has his own business, Renew BioSciences. But the variants do not necessarily indicate abnormalities.

Sequencing Gabby’s parents’ DNA, which should be done this summer, and then comparing their genetic makeup to Gabby’s should narrow the number of variants. The quest may lead to an identifiable mutation or mutations responsible for Gabby’s condition.

Walker theorizes that the process of human development may be switched on and off by a few genes. If a mutation in those genes is responsible for Gabby’s condition, it could provide an important marker for the genes that normally control development.

For the Williamses’ extended family, any answers about Gabby are more apt to be based in faith.

Mary Margret’s parents, Priscilla and John Moorhouse, who often help out, say that they always have an arm ready to cradle Gabby or to sit and rock her.

“She definitely responds to love, and what more can she give you?” Priscilla Moorhouse asked.

Gabby is named after the Archangel Gabriel, the messenger, Moorhouse said.

“She brings us a message all the time.”

Contact Donna Healy at 657-1292 or dhealy@billingsgazette.com.

Copyright 2014 The Billings Gazette. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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