A parent's endless nightmare

Controversial Munchausen's diagnosis spawns suspicion, fear, frustration

By LISA PRIEST

Saturday, September 28, 2002 – Page A1

OTTAWA -- The day, March 8, 2002, began with low, drifting snow and turned to freezing rain. Nicola de Sousa was leaning over a bathtub, washing her daughter's hair when a knock on the door broke her domestic calm.

Standing on the front porch of her townhouse were two workers from the Children's Aid Society of Ottawa. They were investigating an allegation that Ms. de Sousa was subjecting her eight-year-old daughter, Katerina, to too many medical procedures. She let them in, not knowing what to do. As it turned out, they would have come back with police anyway.

The slender woman with large blue eyes asked who had made the allegation, but was given no answer. Then she asked whether she was suspected of having Munchausen's syndrome, to which the investigators replied "yes." She does not know why she did; she thinks she saw a television program about it.

More precisely, it was Munchausen's syndrome by proxy. Those afflicted are usually mothers whose insatiable cravings for attention drive them to make their well children sick, sometimes to death.

The diagnosis has garnered headlines, most recently when a hidden camera at an Atlanta children's hospital videotaped mothers intentionally harming their children. One put urine into her child's IV tube; another put chemicals into her son's stomach tube.

But equally high-profile cases have fizzled, making the diagnosis a controversial one.

Lisa Neave, of Nanaimo, B.C., was accused of deliberately harming her adopted two-year-old daughter, Karliana. The mother had been taught a throat-clearing technique by her pediatrician; authorities thought it was the cause of Karliana's breathing problems.

The mother was diagnosed as having Munchausen's syndrome by proxy and slapped with two counts of assault in 1996. Her two other children were seized. The charges were eventually stayed and her children were returned, but only after a terrible emotional toll that included a divorce. She has since launched a lawsuit over what her Nanaimo lawyer David Brooks calls a "miscarriage of justice."

In Ms. de Sousa's case, she has not been formally diagnosed; she is only suspected of having the syndrome. But she thought the allegation bizarre -- there was no doubt that her daughter was sick and that she had done everything to help make her well.

The investigators told her to get Katerina out of the bath. As she made her way upstairs, she could feel her legs trembling.

Katerina dried herself off, got dressed and went downstairs to talk to the investigators. One of them shared photographs of his children; they left after about three hours.

"We won't be taking her today," Ms. de Sousa remembers the investigator saying on his way out.

Every day since, Ms. de Sousa, 43, and her husband, Eurico, 41, have lived in a state of anxiety, worried the next knock at the door will be the one that takes their daughter, now 9, away.

"I've done everything to make her better," said Ms. de Sousa, tears streaming down her face. "It's not like I've gone to some witch doctor in the Congo. This is a nightmare." And it seems to be a nightmare with no end.

Lawyers have told them there is not much they can do. And so the couple waits and worries.

There is no doubt that Katerina, an attractive child with soulful blue eyes, came into this world a deathly ill girl on July 19, 1993.

She was born with life-threatening liver hemangiomas, an abnormally dense collection of dilated blood vessels. At six weeks of age, she suffered congestive heart failure. The hemangiomas were successfully treated by world-renowned Dr. Judah Folkman of Children's Hospital in Boston. But the child had other problems.

Katerina had a neurological disorder caused by an abnormal stretching of the spinal cord, called a tethered cord. In September, 1997, she underwent spinal surgery in an attempt to correct the problem. She also had incontinence, choking spells, migraines, gagging, double vision, ear ringing, and trembling of the head, trunk and limbs. Most worrisome were her problems with breathing and swallowing. She also had severe pain and fatigue.

The de Sousas' quest to find Katerina the best medical care took the better part of eight years, travel through five states and $100,000 of their personal savings.

And now they are perplexed as to why anyone would question their motives as being anything other than the pursuit of their daughter's health.

"They don't like the fact that two nobodies figured out her problems," Mr. de Sousa said.

It is the 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 surgery was not recommended by Dr. E. C. G. Ventureyra, chief of neurosurgery at the Children's Hospital of Eastern Ontario. In a Dec. 4, 1998, letter to the de Sousas, he likened it to advocating "acupuncture, herbal medicine, or electromagnetic wave therapy.

". . . In my view, when a surgical indication does not exist, surgery should not be used or promoted as 'alternative medicine,' " he wrote.

In a telephone interview from Chicago, Dr. Frim agreed that Katerina did not have the classic anatomical findings of a Chiari malformation and that the operation was a leap of faith. But given that she had trouble breathing and swallowing, it was the best he could offer.

"We have a little bit of a different attitude by and large over here," Dr. Frim said. "When we have something we can do and we're not sure if it's going to help, but it might, then the American way is full steam ahead."

Realizing the de Sousas were in a financial straits, Dr. Frim waived his fee for the operation, which took place in January, 1999. However, the couple still paid substantial hospital costs.

"I have a soft spot in my heart for Canadians," the doctor said. "If we have something that may help and is probably not going to hurt, we should try it. It turned out that it was the right thing to do."

Indeed, Katerina's health improved dramatically after the operation. All of her symptoms have vanished, including the choking spells, migraines and eye rolling. Only the problems resulting from the tethered spinal cord continue.

As for Dr. Ventureyra's comments, Dr. Frim said: "I don't worry about it. Everyone is entitled to agree or disagree. I'm sure he's speaking from the heart and has reviewed the data and believes strongly in his interpretation."

When Katerina's pain in her legs and back persisted, Dr. Frim did a second operation to explore whether her spinal cord had retethered and waived his fee a second time. It turns out it had, and the spinal surgery was done in June, 2001. Her symptoms of leg and back pain, however, did not improve the way the de Sousas had hoped.

At home, Katerina appears to be like any other child, except for the diapers she keeps carefully tucked under her dresses and slacks to hide her incontinence problem.

Her favourite interest is lizards: She has three in her bedroom and she belongs to the local herpetology club. She loves to draw and go fishing with her dad.

But there are things that separate her from the other children.

"She can't play dress up, she can't go swimming with friends," Ms. de Sousa said. "I'm very careful with what she wears."

The de Sousas, worried about their rights regarding their child, made an appointment to meet with Children's Aid officials last month. They went with their lawyer, hoping the file on their daughter would finally be closed.

But it was not. The investigators wanted Ms. de Sousa to see a psychiatrist, which she declined to do, and they also wanted a pediatrician with a background in child protection to look at Katerina's medical file.

The de Sousas insisted that any doctor who reviewed the file be a neurosurgeon. The Children's Aid told them not to get any more medical treatment for their daughter without calling them first.

Denis Boivin, spokesman for the Children's Aid Society of Ottawa, said he could not comment on a specific case except to say that any allegations are assessed.

"Most of these investigations do wrap up within a month, but let's just say more complex ones can extend over a period of time."

Lawyer Christine Davenport, who represented the de Sousas at the meeting, said while she acknowledges that Children's Aid has a duty to investigate, this child has had "oodles of protection from her parents."

"I should have thought they would have closed the file after seeing how the parents have tried so hard to get the child better. The Children's Hospital [of Eastern Ontario] know the child was deathly ill when she was born; the parents couldn't have done that."

In an interview, Marie Belanger, spokeswoman for the Children's Hospital of Eastern Ontario, said: "It's a sensitive area and they've [doctors] done what they thought was the right thing to do and that's where they're leaving it."

She would not elaborate on what that "right thing" was.

None of the doctors who have treated Katerina, she said, are "in a position to speak."

Eric Mart, a forensic psychologist and expert on Munchausen's syndrome by proxy, said the illness has been wrongly diagnosed on mothers who are too demanding with doctors, overanxious or, in some cases, obnoxious.

"For it to be Munchausen's, it has to be a person who knows their kid doesn't have a problem," Dr. Mart said. "If you do it because you're overadvocating, or you're frantic, that's not Munchausen's."

For the meantime, the de Sousas said they have begun to home-school their daughter because of her leg and back pain. They also fear that Children's Aid will scoop up Katerina at school one day.

"You are scared to open the door," Ms. de Sousa said. "You try so hard to keep your daughter alive and then something like this happens."