Health & Medicine

October 28, 2012

Two years after amputations from infection, girl, 4, takes school in stride

For all the bright developments, the pressures of daily life still weigh heavily on the Jeffers family.

Wearing a dimpled smile, Malyia Jeffers slashed through the door on her "special legs," aluminum poles attached to crystalline plastic feet covered with shiny black Mary Jane shoes.

Ducking into Classroom 2 at Hillsdale Avenue Head Start in her flouncy pink skirt and black top, she let go of her father's hand. She stuffed her pink Minnie Mouse backpack into her wooden cube, pulled off her leather jacket and joined her classmates around a small table for fruit and oatmeal.

Malyia is 4 years old, nearly two years removed from the medical trauma that claimed parts of all four of her limbs. She is walking and running on prosthetic legs. She uses the stumps of her heavily scarred hands to hold utensils and peel bananas and write her name and mold clay. At her school, tucked into a strip mall behind a smog station in North Highlands, she is practicing her colors and numbers, improving her vocabulary and making new friends.

Her parents, Ryan and Leah, have the means to take care of her every need, from prosthetics to clothing to computers, thanks to a multimillion-dollar financial settlement they reached with Methodist Hospital. It was in the Methodist emergency room, in early December 2010, where the family waited five hours for treatment of an infection that raged out of control and led to the amputations of Malyia's lower legs, her left hand and part of her right hand.

"Life has changed a lot in the past year," Ryan Jeffers, 31, observed early one morning, his eyes tired as he settled into one of the tiny blue chairs in the classroom. "Malyia is doing great. But every day brings a new challenge."

The 2012 year began auspiciously for the family. After settling with Methodist for $10 million, the vast majority of which is held in trust for their daughter's care, Malyia's parents began looking for a home. In February, they moved into a spacious house in Natomas that they acquired via a short sale.

The following month, the longtime couple, who also are raising two young boys, Jaden, 8, and Christian, 11, got married at Vizcaya in Sacramento. Malyia nearly stole the show as she walked down the aisle with her Auntie Michelle, scattering rose petals.

But for all the bright developments, the pressures of daily life still weigh heavily.

"The stresses aren't gone, not at all," Ryan said, his voice devoid of emotion. "They're just different now."

Feeling the strain

Wedding pictures decorated the living room mantel and walls. Malyia's downstairs playroom was strewn with stuffed animals and Hello Kitty dolls. The cockatiel was quiet in her cage, and the little Yorkie and Maltese dogs patrolled the backyard.

But something was wrong. The house was too quiet.

"Where is everyone?" Ryan wondered as he unlocked the front door one weekday afternoon last month.

The empty rooms sent him into a mild panic. Had Malyia or one of the boys gotten sick? Was Leah OK? He punched numbers into his cellphone and got no response. He ran upstairs but found no clues.

Then he went into the kitchen, where on the counter he found a note from Leah.

"She said she had to leave, and not to worry or come looking for her or the kids," he said. "I have no idea what is going on."

Leah, as it turned out, had left to decompress.

The events of the past couple of years, and especially recent months, have strained the couple's relationship, Ryan said.

This summer, his father, Steve, died unexpectedly from heart problems, and the loss brought Ryan to a breaking point. His anxiety and depression were "putting him in a dark place," his wife said, and she demanded he go to counseling. He resisted at first, but finally agreed to see a therapist a few days after the September day when Leah walked out.

The sessions are helping him process "all the things I have gone through in my life," he said, from a vagabond childhood with a mostly absent mother to Malyia's health crisis and his dad's death. Leah and the kids are back home, and the family is pulling together again, he said.

Money remains an issue.

According to court documents, the settlement awarded about $420,000 to Malyia's parents. Their attorney received more than $1.5 million. About $300,000 went to Medi-Cal as reimbursement for Malyia's care. The rest of the $10 million was transferred to a "special needs trust," to cover the girl's needs until she becomes an adult. A separate annuity will give her $16,000 monthly once she turns 18.

Ryan and Leah used most of their portion of the money to buy and fix up the new house and pay off bills, they said, and both continue to work. Leah, a cosmetologist, cuts hair at home. Ryan works construction where he can find it. They take turns shuttling the children to school, appointments and sporting events. Malyia needs help during meals and with toileting, and still cries out during the night from pain in her limbs.

Her portion of the settlement money is strictly managed by a bank trustee who must approve any withdrawal that her parents request, whether for clothing, therapeutic toys or lotions. They must forward receipts for everything they buy for their daughter and wait for reimbursement, a process they said can be frustrating and time-consuming.

"I understand why it's done this way," said Leah. "I just wish it could be easier."

When the family asked about buying a larger car to accommodate Malyia's wheelchair and prosthetic devices, the trustee turned them down, Ryan said. They learned that none of Malyia's money could be used on the new house, or for space for a hair salon for Leah.

Legal specialists said such safeguards are standard and necessary. They are designed, they said, to make sure the beneficiary is protected financially for life.

So even though Malyia has private medical insurance and is technically a millionaire, her parents cannot afford insurance for themselves. It is a stretch to keep up with their cellphone bills. One day recently, the electric company shut off the power.

"There are a lot of good things about this settlement and this trust," Ryan said. "But nothing in our lives is simple. Nothing seems to come out as planned."

Learning to run

One day, Malyia Jeffers may be able to run like South African sprinter Oscar Pistorius, on artificial legs that were fast enough to qualify him for the London Olympics.

But not while she is still growing.

Her first set of prosthetics were crude stumps that allowed her to practice standing. Her second and third had stiff feet that she decorated with nail polish and stickers. With her fourth set, she can chase her older brothers, ride her toy pony and navigate stairs.

Every couple of years until she stops growing, Malyia will be fitted with a new set of legs, each lighter and more sophisticated than the previous. Insurance will pay for the prosthetics, which generally cost between $2,000 and $20,000 per limb.

"The goal would be to keep her as active as possible, to allow her to keep up with her peers and achieve normal milestones," said Dan Munoz, manager of orthotics and prosthetics at Shriners Hospitals for Children Northern California in Sacramento, where Malyia has received some of her care.

Her latest prosthetic legs have a left knee joint that is locked most of the time, causing her to walk rather stiffly. Later, she will graduate to prosthetics with "fully articulated" joints that she will be able to bend at will, Munoz said.

As for her damaged hands, Malyia prefers using forks, crayons and other items without the special clip that can be attached to her wrist. Instead, she grasps objects using the remainder of her two upper limbs. "I can do it!" she frequently declares.

When she gets older, she may choose to be fitted with artificial hands, her doctors said.

In some ways, children are better than adults at adapting to the loss of limbs, said Munoz.

"Emotionally, kids seem to handle things better," he said. "Maybe it's because they are too young to really miss what they lost."

Physically, though, young amputees endure painful changes as their bodies mature. Malyia is facing one of the most common complications: a spiky growth of bone on her right leg.

"It's a situation where the bone grows faster than the remaining tissues of the limb, and it can be quite painful," explained Dr. Joel Lerman, a Shriners pediatric orthopedic surgeon.

If Malyia does need surgery, as doctors suspect, she will have to function without her prosthetic legs for a time until she heals. "That's a bummer, because she's just starting to master these legs," her dad said.

"Generally, it's just a temporary setback," Lerman said. "Kids tend to bounce back from it pretty well."

Out in the world

The very idea tore at her heart, but Leah knew she had to do it.

For a few hours a day, she and her husband were going to have to trust someone else to watch over Malyia.

It was time to sign her up for school.

They started contemplating the step in April, after Malyia turned 4. "It was very hard for us to realize that for the first time we wouldn't be around to protect her, to pick her up when she fell down," her mother said.

They finally made an appointment last month with the supervisor of a "kindergarten preparedness" school. The school's supervisor, Debi Ross-Brownell, seemed optimistic that Malyia would fit in, although she had concerns.

Would Malyia need a one-on-one teacher? she wondered. Would she feel insecure about her disability? How would other children receive her?

Last month, Malyia and her parents came in for a meeting with Ross-Brownell, teachers and other staff members, and the concerns melted away.

Malyia talked about her "special legs," and without any shyness showed how she puts them on and takes them off. She talked about her family. She discussed her fashion sense and hairdo.

"Meeting her totally changed our perspective," said Ross-Brownell, sitting in the school's lobby as students streamed in earlier this month. "She is so capable, so articulate. I thought, 'We're going to be fine.' Just look at how confident she is."

Leah and Ryan still worried that other children might single Malyia out as different, make fun of her or stare.

It never happened, Ross-Brownell said. "The children are curious," she said. "But not in a mean way."

On a recent morning in the classroom, Malyia finished her oatmeal with raisins, took her bowl to the sink and settled in for learning and play. As she moved about the room, she examined toys and books and stacked blocks alongside her classmates.

Seated on a bench next to a boy her age, she matched plastic animals with similarly colored bowls. She opened and closed locks attached to a wooden plank. She held a shell to her ear and declared, "The ocean!" She sat, riveted, as teacher Debbi Schiele held up a picture of a pig followed by a flash card imprinted with a capital P.

"What letter is this?" Schiele asked a group of youngsters.

"Big P! Big P!" Malyia offered, waving her arms. She clapped and cheered for classmates who gave correct answers

On the playground, Malyia scrambled up a ladder and soared down a slide. She took a turn in the sandbox. After unsuccessfully trying to pilot a tricycle, she climbed onto its back seat for a ride with a friend.

Later, as she headed back toward class with the other students, Malyia stumbled and hit the ground. She paused for a moment, looking around with startled eyes.

Then she picked herself up and walked inside.

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