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Source: The Hawk Eye

3-year-old to undergo procedure in China that could improve quality of life.

SALEM -- Three-year-old Ella Bentler is getting ready to embark on a journey halfway around the world.

Later this month, Ella, who was born with congenital hydrocephalus, and her father, Don, will fly more than 13 hours from Chicago to Qingdao, China. The pair will spend 30 days at a hospital there so Ella can receive a series of treatments where umbilical cord blood stem cells will be put into her body intravenously.

"We're excited, but we're sad. It will be the first time our family has been apart," said Ella's mother, Tanya Bentler, who will stay home with Ella's twin sister and two older siblings. "But this is what we've been waiting for. We didn't think it would take us this far away for our treatment for her, but we're just hoping it will improve her quality of life and it will all be worth it."

When Ella was born, she had a small brain hemorrhage that caused cerebral spinal fluid to sit in the ventricles of her brain instead of traveling to the abdominal cavity to be reabsorbed like most people.

At 3 weeks old, a shunt was implanted behind her ear to drain excess fluid from her brain and take it to other parts of her body. The fluid, however, put pressure on Ella's optic nerves, causing her to develop optic nerve atrophy and cortical vision impairment.

"She can see light. Kids with cortical vision impairment kind of see things in shadows, or shapes," Tanya Bentler said.

Ella is on track emotionally and socially, but her motor skills are lagging. She recognizes what her parents say and reacts like other children, but she can't fully communicate her feelings.

Physically, her legs and arms work well, and she can sit up on her own, but she can't put all of the skills together to function normally. The hope is that the treatments will improve some, if not all, of her developmental deficiencies.

"We have been told by the doctors there that typically when a child has other issues with their development other than the vision, that the stem cells take care of those other issues first," Tanya Bentler said. "So we're hoping we'll see some gains in her motor skills and in her speech. Then they say that the vision generally comes later."

The Bentlers began researching stem cell procedures in January after one of Don's cousin's children went to Germany for stem cell treatments for his cerebral palsy. Ella could not go to Germany because they have never treated a patient with a shunt, so the family turned to a research center in China.

"We contacted them and started asking every question we could think of. After a few conversations, they accepted Ella for treatment," said Tanya Bentler, who has been in close contact with several U.S. families with children undergoing the same procedures in Qingdao.

One 2-year-old boy the Bentlers have been keeping track of has seen much improvement since undergoing treatment.

"We have followed so many patients' blogs, and everybody has seen some kind of change. Some are big and some are small, but at least they are seeing some kind of improvement," Tanya Bentler said.

Ella's stem cells will not be used for the procedures. Instead, they will come from someone who has the same blood type. In China, it is mandatory for every mother to bank her healthy baby's cord blood.

"Stuff that gets thrown away here every day in the United States is being used to really make miracles," Tanya Bentler said. "It's unfortunate that here in the U.S., whenever we talk about stem cells, it's always in the same context as embryonic. The general public is so uneducated about it."

When Don and Ella arrive in China in a few weeks, hospital personnel will take them to their quarters in the medical facility, where they'll stay for the duration of the trip. The family plans to pack all of Ella's necessities, as well as her favorite food and drink so she has plenty of comforts from home. The family will stay in contact using online video conferencing through Skype.

Bentler said many of the doctors and nurses in Qingdao are fluent in English, and there are seven translators at the hospital, as well.

Besides the treatments, Ella also will be provided with physical therapy, speech therapy, occupational therapy, acupuncture and massage, among other things, six days a week.

"We watched one little girl doing several of the therapies, and she's handling it very well. It's very extensive treatment. They're getting all of this other stuff to keep stimulating everything while they are receiving these stem cells," Bentler said.

The trip to China will cost the family thousands of dollars, but they have been saving up for several years to cover the expenses.

"If it works, and we see lots of improvements, we'll go back," Bentler said. "But it would be nice if next time around she could get it here in the United States."