The Globe June 25, 2003
closes suspected case of Munchausen's syndrome
By LISA PRIEST
The Children's Aid Society of Ottawa has closed its case against a mother who had been suspected of having Munchausen's syndrome by proxy, an attention-seeking affliction marked by making well children sick, sometimes to death.
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
"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
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
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."
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