The Globe                                                                                         June 25, 2003 

Children's Aid closes suspected case of Munchausen's syndrome

The agency investigated Nicola de Sousa for more than a year over allegations that she may have subjected her daughter, Katerina, to too many medical procedures.

She maintained that she was seeking care for a child born with life-threatening liver hemangiomas, an abnormally dense collection of dilated blood vessels. Katerina, now 9, also had a neurological disorder caused by an abnormal stretching of the spinal cord, called a tethered cord.

"Nobody won," Ms. de Sousa said in an interview, after hearing that the case was closed without any finding of wrongdoing. "It shouldn't have happened."

Children's Aid Society of Ottawa spokesman Denis Boivin said he couldn't comment on the matter. However, he said the agency closed 7,000 cases in 2001-2002, meaning that those children were not found to be in need of protection or were no longer in need of protection.

Joseph Hamon, an Ottawa-based family lawyer who represented the de Sousas, said that while he understands the agency has to investigate complaints, he didn't agree with how it was carried out.

"The CAS puts the onus on the parents -- you're guilty until proven innocent," said Mr. Hamon.

The family's quest to find Katerina the best medical care took the better part of eight years, including travel to Toronto, Washington, Baltimore, Chicago, Philadelphia and Boston. They spent $100,000 of their personal savings.

It was two operations done by Harvard-trained David Frim, chief of pediatric neurosurgery at the University of Chicago Children's Hospital, that appear to have caused the most concern.

One of the operations was a type of brain surgery for what is medically called a posterior fossa decompression for a Chiari malformation, a condition in which part of the brain protrudes down into the spinal canal.

It turns out that Katerina did not have the classic anatomy of a patient with such a malformation. Yet, she had the symptoms: choking spells, ringing in her ears, migraines, eyes that involuntarily rolled upward and trouble breathing and swallowing.

The operation was not recommended by E.C.G. Ventureyra, chief of neurosurgery at the Children's Hospital of Eastern Ontario.

Dr. Frim, who waived his fee for the operation, agreed that Katerina did not have the classic anatomical findings of a Chiari malformation. However, he said that given her problems with breathing and swallowing, it was the best he could offer.

After the surgery, Katerina's health improved dramatically; all of her symptoms have vanished, including the choking spells, migraines and eye rolling. Only the problems resulting from the tethered spinal cord continue.

"There were people who wouldn't speak to me [during the investigation]. People who were friends of ours," said Ms. de Sousa. "I felt hurt."