Parents warned about 'medical hoax' surrounding optic nerve hypoplasia

Key Points

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 treatments, which are paid for entirely out of pocket by the parents, can cost $50,000 or more.

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

Aside from 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 in St. Louis.

The procedure would not work for several reasons, according to Dr. Tychsen:

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 large print, magnifiers, and other aids designed for people whose vision is impaired.