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Rift with hospital keeps father from seeing daughter

THE BALTIMORE SUN

In a room at Mount Washington Pediatric Hospital, Velda Jackson dons a yellow gown and washes her hands. She has come to visit her daughter.

Tenderly, she bends over 12-year-old Pamela, who suffers from brittle bones and a rare neurological disease that has left her with only involuntary muscle reflexes.

Almost every day, Mrs. Jackson travels from her Columbia home to the Baltimore hospital where her daughter has been a patient for nearly seven years.

These days, however, she makes the 30-minute trip without her husband, Raymond. Since last summer, his visits have been curtailed in a sometimes-heated dispute with hospital authorities over Mr. Jackson's role in Pamela's treatment.

The chain of events began when Pamela suffered two leg fractures. Hospital officials did not accuse Mr. Jackson of causing the injuries, but say he later jeopardized his daughter's health by disobeying doctor's orders, using medical procedures he is unqualified to perform and intimidating hospital staff members. Mount Washington officials suspended Mr. Jackson's unlimited visiting privileges.

Since, the hospital has offered Mr. Jackson limited visiting privileges -- an offer he has refused, even though that means not seeing his daughter for long periods.

Mr. Jackson says he has done nothing wrong and that his assertive questioning of hospital procedures is his way of advocating the best care for his daughter.

"This is basically a character assassination," Mr. Jackson said of the hospital's claims.

Mount Washington might seem an unlikely site for such a dispute.

Founded in 1922, it is a 139-bed nonprofit rehabilitation and specialty hospital for children with chronic lung diseases, congenital or acquired physical disabilities, chronic medical conditions, birth defects and chronic neurological disorders.

Parents have 24-hour visiting privileges and are encouraged to be involved in their children's care.

"The parent is key," Dr. Edward Sills, medical director of Mount Washington, said. "We encourage parents to room in and participate in every team conference."

The Jacksons said they were drawn by the hospital's commitment to parental involvement.

"Mount Washington allows the family to come in and be part of the patient's life," Mr. Jackson said. "We can bring her brothers there, we can have Christmas there. It's the only hospital of its kind in a 100-mile radius."

Before Pamela became ill, her parents recall, she was a happy, healthy child who attended Nature's Way Children's Center in Columbia.

But at age 4, she developed flu-like symptoms that led to labored breathing and a high fever. Physicians diagnosed the girl's illness as Leigh's syndrome, which slowly erodes the nervous system and can lead to death.

Pamela was treated at Mount Washington for about six months before the Jacksons took her home for a year in 1986. Pamela returned to Mount Washington in 1987 after complications with Mr. Jackson's health insurance prevented her from receiving further care at home.

The dispute between the hospital and Mr. Jackson began after the girl re-entered Mount Washington.

Mr. Jackson said he noticed extreme differences in the quality of care that Pamela had received at home and the care she received at Mount Washington. For instance, he said, the hospital staff didn't change Pamela's diapers often enough and failed to bathe her properly.

An investigation by the state Department of Health and Mental Hygiene, requested by Mr. Jackson and completed April 8 of this year, cited no problems in Pamela's care or grooming, and investigators were unable to conclude that rough handling had led to her broken bones.

[The health department cited deficiencies in the hospital's medical documentation, nursing staff ratios, quality assurance program and system for isolating vulnerable patients from the risk of chicken pox but threatened no disciplinary actions.

[Mount Washington officials say they expect to submit by Friday a plan to correct the deficiencies. Already, the hospital has hired 13 new nurses, said Roberta Milman, a vice president. ]

The most serious clash between the hospital and the Jackson family took place after Pamela suffered leg fractures in April and May 1993.

The Jacksons met in June with hospital officials and demanded more intensive nursing care.

The hospital responded by forbidding the Jacksons to touch their daughter below the neck, move her unnecessarily or perform "range of motion" exercises -- massaging and working muscles to prevent deterioration.

Mr. Jackson said he complied with those conditions. But last July, a nurse accused Mr. Jackson of using range of motion exercises on Pamela's left wrist and arm. Mr. Jackson said he was simply massaging the girl's wrist to reduce swelling.

On July 22, hospital officials filed suit against Mr. Jackson, saying he had verbally abused the staff, disobeyed medical orders against moving Pamela and used medical procedures he was unqualified to use. They got a temporary injunction barring him from visiting Pamela.

The suit was dropped.

Hospital officials declined to discuss the details of Mr. Jackson's case, but they say they would take any appropriate action, even revoke visiting privileges, to protect a patient.

"The parent has 24-hour visiting privileges, but if a problem develops between the hospital and parent, the hospital has to take action to protect the patient," said the hospital's attorney, Gerald Walsh.

Suspending parents' visiting privileges is rare, Mount Washington officials said. Spokeswoman Jeannette Falbo could cite only two such cases in the past five years.

Before his privileges were revoked the first time, last July, Mr. Jackson appeared before the hospital's ethics committee and spoke to the hospital's president.

Last August, Mr. Jackson and hospital officials agreed to supervised visits during which Mr. Jackson was allowed to wipe Pamela's face, comb her hair and assist nurses with chores that didn't require Pamela to be moved. That lasted less than two weeks.

Mr. Jackson said his visiting privileges were revoked again, in mid-August, after nurses grew weary of his demands that they change Pamela's diapers immediately and perform other tasks he could no longer do.

"I haven't asked anything of the nurses that I haven't done myself," he said.

Mr. Walsh refused to say why the hospital revoked Mr. Jackson's unlimited visitation privileges the second time, saying only, "The hospital acted pursuant to the agreement."

Last October, hospital officials renewed the offer of limited visiting privileges, but Mr. Jackson refused. He said he had done nothing to warrant such restrictions.

Now, Mr. Jackson talks to Pamela's doctors and nurses by phone. He questions his wife after she visits Pamela and sees the girl himself when she receives treatment at other hospitals.

The changes have affected the relationship between father and daughter, Mrs. Jackson said.

"He used to sing to her softly; he would stroke her. . . . I'm sure he misses her," Mrs. Jackson said of her husband. "That was a part of his everyday life. That was a part of his everyday routine. I don't think a parent can love their child any more."

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