Saturday, August 30, 2008

Saving Sierra: Baby needs a lot of help to beat the odds

Telegram Staff Writer

Some say it takes a village to raise a child. That very well may be true, but in Sierra's case - it'll take a world.
The future is bleak for 11-month-old Sierra Rose Fedelem. She's blind, unable to respond to touch and her brain is underdeveloped.
'The doctors say she'll never be able to walk or talk,' said Rosetta, her 26-year-old mother.
Her parents want to save her. Their plan is to raise $50,000 and travel to the Beike Biotech Center in China for Sierra to undergo experimental stem cell therapy.
'That'll cost about $25,000,' said the father, 26-year-old Jason. 'The other half is for the purchase of a hyperbaric oxygen chamber.'

In the beginning...
The young couple wasn’t planning to start a family when Rosetta’s pregnancy test turned positive.
“She was a surprise,” Rosetta said, cradling Sierra. “My little miracle baby.”
As it is with several first-time parents, the pocketbook wasn’t too thick.
“We barely had enough money to get by, just the two of us,” Jason said. “Neither of us had any insurance.”
But extra hours were worked, and Rosetta got the care she needed.
“The pregnancy was an absolute breeze,” she said. “There were no hang-ups. There was practically no morning sickness.”
And the birthing process was easy too, she said, “until everything changed.”
“I had never seen a baby be born before,” Jason said. “I thought everything was going OK. Nothing seemed wrong, until they started bagging her. All of the sudden, they were calling an ambulance.”
Somehow, Sierra’s umbilical cord had been crushed.
“That made her go without air for too long,” Rosetta said. “They never did determine how long it was that she didn’t breathe.”
From the time the ambulance was called, Jason said it took seven minutes for Sierra to be transferred from the Killeen area birthing center to the Metroplex Adventist Hospital in Killeen.
The doctors were able to stabilize the baby there, but Rosetta said they didn’t have the resources to keep her there.
So Sierra was transferred to the Scott & White Neonatal Intensive Care Unit — where she remained for the first seven weeks of her life.
“When I saw that my baby was alive, I was excited because she was moving,” Rosetta said. “But she was having seizures.”
At that moment, the mother knew her baby was in for a world of struggle and there was nothing she could do to help except pray.
“It made me fall more on the Lord,” she said. “I have to take one day at a time. He’s not going to give us more than we can handle.” Jason nodded his head, his had resting on his wife’s shoulder.
“Gotta rely on Lord,” he said. “If I start looking at tomorrow or the next five years, it’s too much. It’s now that we’ve got to live.”

Will it work?
Sierra’s neurologist hasn’t commented. Her pediatrician could only describe her condition.
“I think the therapy is too new for them to have an opinion,” Jason said. “We’ve done a lot of research, and we’ve found out that China’s success rate with stem cell therapy is 86 percent higher than it is in other countries.”
Most of his information, he said, comes from online medical articles and conversations with parents of children similar to Sierra.
“We haven’t made official contact with doctors in China yet, but a U.S. representative from that Center seems hopeful,” Jason said.
The parents’ goal is to get their baby to China by February.

Who is Sierra?
She doesn’t play, and she’s not starting to toddle and say “Mama” like other babies her age.
“But she’s managed to do the army crawl,” Rosetta said. “She can bring herself up. And she can eat from a bottle. She’s not on a feeding tube anymore.”
The baby does make facial expressions.
“Especially if she doesn’t like what’s going on,” Jason said. If Sierra doesn’t want to eat her food, Rosetta said she’ll pretend to sleep.
“It’s that streak of stubborn that she gets from her parents,” Jason said. “That may be why she’s so determined to stick around.”
Sierra’s family has learned a lot of new terms in the 11 months she’s been alive. Here are some of them...
Hypoxic Ischemic Encephalopothy: Brain damage caused by lack of oxygen. As a result, Sierra is blind and developmentally challenged. Her prognosis is that she’ll likely never walk or talk.
Scoliosis: Abnormal curving of spine.
Microcephaly: A small-sized head due to lack of brain growth. It will not grow in proportion with the rest of her body.
Cerebral Palsy: Poor motor abilities. Her symptoms include the occurrence of seizures and varying degrees of physical disability.
Hyperbaric Oxygen Therapy: A therapy in which a patient breathes compressed air from within a pressurized oxygen chamber. This process allows oxygen to reach areas of the brain that can’t be reached by the patient’s normal breathing. This therapy rejuvenates the brain cells and helps rehabilitate the patient.
Stem Cell Therapy: A process wherein dead cells in a person’s body are replaced with live cells, often from umbilical cords.
How to help
So far, $10,000 has been raised for Sierra's medical care. To help the family reach its $50,000 goal, donations are welcome at Bank of America via the Sierra Rose Fedelem Medical Fund
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