High-tech hope takes root in China

BEIJING — David Landewee saw something in Christopher Schmieder.

Like Landewee, the 18-year-old Schmieder had been paralyzed from the chest down by an accident that injured his spinal cord. And like Landewee, Schmieder was driven by the desire to walk again.

So Landewee, of Clay County, contacted his doctor in China. He used his influence to move Schmieder, of Louisburg, Kan., to the top of a two-year waiting list for a controversial high-tech procedure performed at a dilapidated, half-century-old hospital on the western outskirts of Beijing.

Doctors there inject specific cells from aborted fetuses into the spine with the hope these cells will stimulate regeneration of damaged spinal cords. Although many scientists remain skeptical, hundreds of people from around the world have come to Beijing for treatment of spinal cord injuries. Patients with ALS and other conditions also have flocked to the hospital to receive the injections in their brains to hopefully halt progression of their illnesses.

Schmieder had the surgery on Thanksgiving Day. By Saturday afternoon, he was in fine spirits, announcing new sensations in his legs.

“I’m sweating in my legs, which is a big deal. It means the (nerve) cells are working,” Schmieder said. “In my legs, I feel more deep muscles. If you squeeze, I feel it.”

It’s the same operation Landewee, 42, underwent in March. He credits it with allowing him to walk with braces and a walker and with restoring sensations to his body that he hasn’t felt since his auto wreck 10 years ago.

“I’m hopeful he’ll do well. I think he will,” Landewee said before traveling to Beijing with Schmieder and Schmieder’s mother, Christine Casto. Landewee is filming Schmieder’s story for a documentary he expects to appear on a U.S. cable network.

“He said he wanted to walk again and was adamant about it,” Landewee said. “… I think he’s got the drive and he would put the work into it.”

In August 2004, Schmieder was 35 feet off the ground, painting his father’s house in Louisburg, when his rented bucket lift tipped and catapulted him 45 feet. His twin brother, Garrett, found him 30 minutes later.

Schmieder spent two months at Craig Hospital, a specialty hospital in Englewood, Colo., where he learned to use a wheelchair. Doctors offered little hope he would ever walk again.

“I pretty much wanted to get home to a normal life,” Schmieder said. “I was hoping my body would fix itself. It’s gotten better, but not anything huge.”

Schmieder’s mother was desperate to find help for her son. When The Kansas City Star published a story about Landewee in April, she contacted him immediately.

“I met him the next day,” Casto said. “That was the first time we saw him walk. He could take just a few steps then, with a lot of assistance.”

But that was enough to give Schmieder hope.

“I thought it was pretty cool,” he said. “I really wanted to get the surgery. I’d be doing the same things he’s doing.”

Schmieder visited Landewee at his home, they spoke frequently on the phone and their families ate out together.

“David’s been such a good friend,” Casto said. “He’s given us so much hope. He’s inspirational.”

At the hospital

Casto said Landewee intervened with Huang Hongyun, the American-trained neurosurgeon who does the procedures, to take Christopher ahead of his October 2007 place on the waiting list. Landewee, a vocal advocate of spinal cord injury research, has remained in close touch with Huang’s scientific supporters in the United States.

Schmieder’s surgery and travel costs total about $25,000 and aren’t covered by insurance. He is paying his way with money received from a settlement related to his accident.

On Nov. 14, he, his mother and Landewee left from Kansas City International Airport. When Schmieder and his mother first saw Xishan Hospital, they were taken aback by its decrepit appearance.

“Coming into the hospital was a shock. It was like, ‘Whoa!’ ” Schmieder said. “I’m used to going to hospitals where it’s all high-tech and new.”

The hospital, tucked along the flanks of the outlying Western Hills of Beijing, has seen better days. It was set up in 1954 as a sanitarium for the newly minted Communist republic’s model workers. Its name was changed to Xishan (or Western Hills) Hospital in 2004.

Early last week, Schmieder still seemed a little uneasy about the surroundings, the foreign language and the different medical treatment.

“This morning they came in and they really can’t speak English,” he said of the nurses. “They say, ‘Take blood.’ ”

Casto acknowledged some trepidation mixed with her conviction that the procedure would help her son.

“My father was concerned. My father said, ‘Honey, if something goes wrong, you have absolutely no recourse,’ ” she said.

As days passed, both Schmieder and his mother appeared more at ease in the hospital. Wednesday afternoon, the day before the surgery, Schmieder wheeled around the hospital, posing for pictures, showing off the bandages on his back where the medical team would inject the fetal cells and discussing his chat with Huang the night before, his first real meeting with the neurosurgeon.

“He said I’ll probably have some real quick recovery and then it kind of slows down at a steady pace for a couple of years,” Schmieder said. He added quickly, “He said it’s possible to be walking in a year.”

Casto came out of the meeting with Huang feeling “really encouraged.”

“I was bawling my eyes out after he left the room,” she said. “It really gave us a lot of hope.”

Implanting hope

Signs of hope and happiness generated by Huang’s work literally hang from the hospital walls in the form of framed photo collages of patients from all over the world.

Huang says he has operated on more than 300 patients from 50 countries using the technique of implanting olfactory ensheathing glial cells that are involved in the sense of smell.

The olfactory nerve, which sends sensations of smell to the brain, continually regenerates throughout a person’s life. The cells Huang uses support this regeneration by wrapping around nerve fibers and promoting their growth.

Although he made his name by bringing about modest motor improvement in those with spinal cord injuries, Huang is branching out to treat other illnesses. In rapid-fire but heavily accented English gained during study in the United States, Huang explained that barely half his patients now are spinal cord-injured.

“Right now, besides ALS and spinal injury, we do brain damage, MS. Also, we treated another patient whose genetic disease caused vision damage. He lost his vision. Not totally. He only can see very, very little. After several weeks, he got some, not very much, but got better,” Huang said.

Huang said he has fine-tuned his technique in the past year on spinal cord patients, using less invasive surgery and matching the fetal cells with the patients.

“Right now, we just use two keyholes, less invasive. Also right now we do cell matching. Cell matching means that the donated cell matches with the host cell,” he said.

Even as he affirms that patients see improvements in their motor abilities, Huang is forthright in acknowledging that science still has not explained how the regenerative cells trigger the improvements.

“The mechanism is still not clear,” Huang said. “We still don’t know something. … But we must face the fact. We must face truth. The truth is that patients get some benefit, get some function improvement. That’s the truth.”

Researchers at Rutgers University in New Jersey have successfully duplicated Huang’s surgery with lab rats. Just like the human patients, the animals quickly regained limited sensation and movement. And a half-dozen other research groups also have reported positive results using olfactory cells to treat spinal cord injuries in animals.

Even so, scientists have doubts about Huang’s work. So far, he hasn’t produced controlled studies that compare the progress of patients who receive the therapy to those who don’t. And critics say much of his evidence of patient improvement is based on anecdotes, rather than on hard scientific measurements.

“Yes, there is some scientific basis. But this is still a controversial and unconventional treatment that the Western medical community hasn’t endorsed,” said Shih-Fong Hsu, a specialist in rehabilitation medicine who was Schmieder’s physician at Craig Hospital.

When Schmieder asked whether he should go to Beijing, Hsu said he replied: “Chris, this is purely your decision. Unfortunately, today we cannot fix you. Hopefully, it will do you some good.”

Huang, who travels constantly to the West to explain his procedure, is testy about the wall of skepticism he faces. Even with documented results, Huang says he is unable to persuade some doubters.

“They don’t believe,” Huang said. “They just don’t believe. No matter what you say. No matter what other people say. No matter what the patients say. Even some patients say, ‘I get some benefit, I get some result.’ They say, ‘I don’t believe it, just don’t believe it.’ No matter what the fact is. That’s truth. I really, really don’t understand why people have this kind of thinking.”

Hard work

Landewee says the operation gave him back the use of muscles in his hips, allowing him to move his legs for the first time since he was injured.

With the physical therapy Landewee has had since his operation, he can now walk as far as 375 feet, using leg braces and a walker. That’s 25 yards longer than a football field.

And it’s strenuous work.

At the Rehabilitation Institute of Kansas City recently, Landewee made the laborious journey around the corridors as physical therapist Linda Klaiber held on lightly to a waist strap to help him maintain balance.

After every 30 paces or so, Landewee had to rest. His heart pounded. Beads of sweat trickled from his forehead.

“This is the hardest thing I’ve ever done,” he said. “It really takes it out of you.”

In recent months, Landewee has been getting more control of the muscles in his upper thighs, Klaiber said. But she hasn’t seen any muscle being added.

That doesn’t mean he won’t make any more progress.

“He just has to keep proving me wrong,” she said. “That’s what keeps him going.”

In the hospital room next to Schmieder’s, ALS patient Bruce Wilkinson of Tampa, Fla., was recuperating after surgery by Huang.

Before the operation, Wilkinson said, he couldn’t manage buttons and couldn’t write, and he had difficulty even eating. As a nurse performed physical therapy on his arms, Wilkinson could barely stop talking about his improvements.

“I wasn’t able to speak this clearly before,” he said. “I tell you, it’s elation. I have a new lease on life. … I can sit here and wolf down food, when before it would take forever.”

Wilkinson had little patience for the U.S. medical establishment or those who criticize Huang for using fetal cells.

“Whatever he’s doing is wonderful, Dr. Huang. In the United States, what did they offer me? Nada. Nothing,” Wilkinson said.

Chris knows that after the surgery he’ll have to put in the same disciplined effort as Landewee in order to retrain muscles that have been dormant for more than a year.

But his optimism appears unbounded.

“I hope to be walking in six months, by the summer,” he said. “I mean, walking unassisted and under my own power.”