Photo by JERRY McBRIDE/Herald photos
Stephanie Smith plays with her 1-year-old son, Leaf Baxter, on Tuesday in their Durango home. They left Sunday for China, where Leaf will be given umbilical stem cells.
When the odds are long, sometimes you go a long way to push them in your favor.
Leaf has faced long odds from the get-go. His mother's labor was rough; Leaf was delivered by C-section, and 12 hours later he stopped breathing and turned purple. He was quickly flown to Denver Children's Hospital, where he spent four days in intensive care before doctors determined the root of his problem.
Leaf has a condition called hypopituitarism - an underactive pituitary gland, resulting in hormone deficiencies. To compensate, he gets several medications - cortisol (to cope with stress), levothyroxine (for his thyroid) and a growth hormone.
A consequence of hypopituitarism is another condition, not so easily treated, called optic nerve hypoplasia. This means his optic nerves are not hooked up correctly. Tests show his eyes work, however, the optic nerves aren't adequately delivering signals to the brain. He does react to light, but the picture he sees is fuzzy at best. The test earlier this month in St. Louis revealed his vision acuity is so poor it is nonrecordable.
Smith and her husband, Durango attorney John Baxter, figured they could handle the hormone problem. As with diabetes, if you have the right medications, you can live a fairly normal life.
But blindness was something else.
"That was the hardest part for us," Smith said Tuesday in her Durango home. "That was really hard for me to accept, and I guess I haven't accepted it. I'm just trying to move forward and improve his vision the best I can."
Leaf has been to Johns Hopkins in Baltimore, to doctors in St. Louis and Denver and Durango. They've all told Smith and Baxter that nothing could be done to help his vision.
His lack of sight has affected his development. He doesn't crawl, although he likes to stand with the help of an adult finger or two and appears nearly ready to take a few steps.
Leaf played nearby on the floor with small toys. His hearing is extra sensitive, Smith said, helping to compensate for his lack of sight. One of his favorite toys is a tiny plastic saxophone that plays and lights up at the touch of a button. When he fussed, Smith clicked a couple buttons on a laptop to play music and soothe him.
Leaf is not a stranger to doctors' offices - "he gets poked and prodded" a lot, Smith said - and he's about to endure a month in a foreign hospital. Stem-cell therapy is at the same time promising and controversial. The United States currently bans research involving embryonic stem cells.
Meanwhile, China has begun offering therapies using umbilical and adult stem cells to help various conditions, including the rare optic nerve hypoplasia. Smith said she is in touch with parents whose children's eyesight has improved after stem-cell and physical therapies performed in China. The procedure is not approved in the United States.
"Lots of people tried to discourage us, just because it's a big unknown," Smith said.
Soon after Leaf's birth, Smith discovered on a European-based Web page information about the umbilical stem-cell treatments in China. Beike Biotechnology, a Chinese company, is in the forefront in this field, and Smith contacted Beike through a liaison in Chicago. After jumping through countless hoops - doctors' visits, paperwork, etc. - she was able to schedule Leaf for a one-month treatment at a hospital in Hangzhou, a city of 6.5 million on the East China Sea near Shanghai. She and Leaf likely won't be the only Americans there for treatment.
They left Durango on Sunday, and their stay is from Nov. 20 to Dec. 20. She'll sleep on a cot in Leaf's room. Over the course of six spinal injections, Leaf will receive 60 million umbilical stem cells.
Theoretically, the stem cells - taken from the umbilical cords of healthy Chinese babies - will find their way to the optic nerves and regenerate them. Next, Leaf's brain will have to learn to process the images from his eyes.
"We definitely have our moments of, 'Oh my goodness, I hope we're doing the right thing.' But every time that little bit of doubt shows up, I'm reassured by something," Smith said.
For instance, she and her husband have been impressed by people's generosity.
"After you start getting the word out, people come out of the woodwork to help," Smith said.
Their campaign to raise $60,000 to pay for the trip and the treatment got a boost recently when Chicago Cubs pitcher Ryan Dempster and his wife, Jenny, donated $5,000 to the cause. The Dempsters are complete strangers.
Progress is hoped for within a month or two of the treatment. Smith said Leaf already has doctor appointments scheduled about a year out. But maybe birthday No. 2 will be different.
"It's been all work and no play this year," she said. "But next year we're looking forward to a little more fun for the little guy."
johnp@durangoherald.comJohn Peel writes a weekly human-interest column.
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