Parents warned about 'medical hoax'

St. Louis-Two pediatric ophthalmologists at St. Louis Children’s Hospital, Lawrence Tychsen, MD, and Gregg Lueder, MD, are trying to warn the public about what they call a “21st century snake oil” scam, according to a prepared statement issued by the hospital.

Recent stories in the media report that parents are taking their children to China for umbilical cord stem cell (CSC) infusions to treat optic nerve hypoplasia (ONH), a disease that causes partial blindness at birth. The cost of the treatments, which are paid for entirely out-of-pocket by the parents, can be $50,000 or more.

During the procedure, CSCs are extracted from the umbilical cords of Chinese mothers and their newborns, then injected into the fluid around the spinal cord of the American children. The parents of those children are led to believe by Chinese doctors that the CSCs are an effective treatment.

No objective visual gains after CSC treatment have been demonstrated in any child with ONH, however, according to Dr. Tychsen and Dr. Lueder, who diagnose and treat dozens of children with ONH each year. Therefore, they said they are concerned that the CSC reports will mislead many parents of children with ONH, who may bankrupt savings, go deeply into debt, or organize fundraisers to pay for sham treatment. 

Aside from grave ethical concerns, the injections could be dangerous, introducing infectious or toxic matter into the brain fluids, said Dr. Tychsen and Dr. Lueder, who also are professors of ophthalmology and visual sciences at Washington University School of Medicine, St. Louis.
 
The procedure would not work for several reasons, according to Dr. Tychsen. One, CSCs placed in human spinal fluid would not be transported into the fibers of the optic nerve. Two, CSCs have never been shown to transform into optic nerves, even in fish or rodent experiments. And three, 100,000 or so fibers would need to grow to improve vision, not just a few, and each of the fibers would need to connect precisely in the brain, he said.

Dr. Lueder said that parents of children with ONH should not despair, however. “Many babies born with ONH will have some improvement as they mature, because they learn to exploit more effectively the optic fibers that remain.” He added that many children with ONH function reasonably well in school using enlarged print, magnifiers, and other aids for those who are visually impaired.