For the week of September 2 thru September 8, 1998
"I want to be a dancer or a singer."
Five-year-old fights for a healthy life
By AMY SPINDLER
Five-year-old Lilly Baber is planning a party.
"Its not going to be a present party--people wont bring you presents like on your birthday," single mother Christina Etzrodt warns her precocious daughter. "Just a food party."
Mother and daughter are throwing the party to celebrate the simple pleasure of eating, something Lilly hasnt been able to do for a month.
Lilly was born with spina bifida, requiring numerous surgeries for related complications, the last one leaving her body weak and unable to properly digest food for varied amounts of time. Lilly is fed intravenously, although she admits to having eaten one red popsicle.
Lilly takes delight in what shell eat at her party, and it takes her only a moment to recall more than a dozen items on her official list.
"Hot-dogs, gummi watches, sloppy Joes, three pizzas with cheese, pepperoni, and pineapple, and chocolate pudding," she begins.
According to the Spina Bifida Association of Greater New Orleans, spina bifida is a disabling birth defect of the spinal column that results from the failure of the babys spine to close properly during the first month of its mothers pregnancy.
In severe cases, such as Lillys, the spinal cord protrudes from the babys back and surgery is done within 24 hours to close the back and preserve existing functions of the spinal cord. Spina bifida can cause varying degrees of paralysis, accumulation of fluid in the brain, and bowel and bladder complications.
Lilly, who is unable to walk, has spent the past three weeks in a Salt Lake City hospital undergoing an experimental surgery to reconstruct her bladder to make it more usable.
The surgery was unsuccessful, and left Lilly with a hole in her bowel requiring the insertion of tubes into her kidneys to drain them.
Lilly is at home now, waiting for her body to strengthen before she undergoes the surgery again.
"They ran into a wall, and so I started looking for another specialist," says Christina of the doctors who sent Lilly home until they figured out their next step.
She and Lilly are flying to Seattle this week to see a pediatric urology specialist. Although not sure what to expect, Christina hopes the specialist can give some insight into Lillys condition.
The pair are used to flying and to hospitals. Lilly has undergone 17 surgeries, including two eye surgeries, foot surgeries to straighten out club feet, two surgeries to install shunts to drain the fluid from her brain, and she has had her pelvic bone broken three times to better position it.
"There have been so many complications, so many life and death situations," says Christina. "But Lillys very strong-willed and shes very stubborn, which is good," she says.
Lilly will sternly tell a nurse to leave her room, or tell a doctor she will not see him.
Christina explains that Lilly is fighting for some control in her life.
"She feels a total lack of control. She has nightmares, and they involve a car rolling down a hill or a situation where she has no control," she says.
"Shes very, very outgoing--shes so bossy," Christina says with a laugh. "She directs the play, doles out the rules. Shes quite a little girl."
Lilly loves Barbies, acting in plays with her friends, and putting on makeup.
"But, what happened last time you put on makeup?" Christina asks.
"I put nail polish on my face," Lilly remembers with a slight grin.
One of Lillys favorite play mates is her sister Clara, who is seven years old. The dynamic between the sisters is a balancing act of protectiveness, sibling rivalry, a struggle for moms attention and playing together famously.
Christina says Clara wants to take medicine like her sister and to visit Salt Lake City. Lilly wishes to try the things her older sister does, such as snowboarding, swim lessons, and BMX races.
When asked what she would wish for if given three wishes, Lilly answers without hesitation.
"I want to have a sleepover, be in another play, and I want to have a parade," she says.
"Do you like happy endings?" she then asks without missing a beat.
Christina is working to find a happy ending for Lilly, and hopes her daughter can start kindergarten this year, as soon as she can eat properly and there are no more drainage tubes in her body.
However, until she recovers from surgery Lilly will spend her days with mom, which are interrupted five times at 6 a.m., noon, 6 and 8 p.m. and midnight for intravenous antibiotics, which take an hour to infuse into her body.
"I am going to have such a good time in kindergarten--Im going to play," says the bright little girl.
Lilly is looking forward to learning how to read and to write, so she can pen the dramatic plays that she makes up in her head.
"I want people to know that despite everything, shes a happy and normal little girl," Christina says. "Its the little things like doing things outside, or camping, that are more difficult, but basically theyre inconveniences, not complete barriers that we cant get around."
"But, you know what sucks? Halloween," Christina says. "Lilly isnt able to go up to the door and her sister has to bring the candy back to her."
Christina says that while parents of Lillys friends are understanding, some people gawk and can be downright rude, wondering aloud, "Whats wrong with her?"
"Its great when a person comes up and just asks, like kids do, Why are you in a wheelchair? Lillys happy to answer them," she says.
Christina, whose days include a job at Sawtooth Engineering, Lillys doctor and physical-therapy appointments and time spent caring for two girls, is upbeat even though Lillys future is uncertain.
Lilly, on the other hand, is certain about her future.
"I want to be a dancer or a singer," she says.
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