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Kept in the Dark

A Virginia family searches for answers in a five-year fight to find out what went wrong with their daughter’s brain surgery

By Gadi Dechter | Posted 2/9/2005

A Virginia family searches for answers in a five-year fight to find out what went wrong with their daughter’s brain surgery

After claiming for nearly five years that the medical records of a severely brain-damaged girl were lost, Johns Hopkins Hospital recently notified her parents that the records had been found—just days before a malpractice suit her parents brought against the hospital was scheduled to go before a judge.

Steven and Karin Gregg of Fairfax, Va., filed the complaint last fall in Baltimore City Circuit Court, alleging that hospital employees caused catastrophic injury to their daughter, Laura, and then intentionally destroyed the patient records that documented the alleged malpractice. The then-4-year-old girl underwent brain surgery at Hopkins in May 2000 to treat a debilitating seizure condition, but the injury occurred several weeks later, after a follow-up operation to clean an infected incision.

“We’re frustrated that it took a lawsuit to get [Hopkins] to finally produce the records,” Steven Gregg says. “But at least we now appear to have the full set, and time will tell whether they can help us prove that Laura did not receive the care that she should have.”

The documents in question are paper records for Laura’s June 24-July 8, 2000, hospital stay. Hopkins had provided the Greggs with “electronic patient records,” which are physician-dictated summaries of operations and admissions, but not the real-time notations made during patient care.

The belated discovery of the paper records is not necessarily good news for the plaintiffs.

While the absence of the records would have made it practically impossible for the Greggs to prove malpractice to a jury, ironically, the hospital’s inability to produce them might well have provoked the judge to issue a pretrial verdict in the Greggs’ favor, according to legal experts who reviewed the complaint.

By Maryland statute, hospitals have a duty to give patients their medical records when asked, and courts around the country tend to be unsympathetic to defendants who are responsible for negligent or intentional spoliation of relevant evidence. In 1997, a Massachusetts judge presiding over a similar malpractice case awarded $4.1 million to a patient whose records had been lost.

The Greggs’ attorney, Washington malpractice lawyer Daniel M. Schultz, says he’s not surprised that the records have been discovered after all these years. “Having brought this formal claim and having shown our determination to go forward and impose consequences for [Hopkins’] failure to produce the records, I’m sure it spawned a new effort and a renewed energy to locate them,” he says. “Somebody was yelling at somebody over there.”

Hopkins declined to comment about the records, except to confirm their discovery, which came just 10 days before the preliminary hearing scheduled for Jan. 14. Schultz requested a postponement in order to have the paper records examined by medical and document-tampering experts, and a new hearing has been set for Feb. 25.

Filed in October of last year, the Gregg suit garnered local media attention both because of the missing records and because it involved celebrity Hopkins neurosurgeon Dr. Benjamin Carson, famous for successfully separating “Siamese” twins conjoined at the brain.

Carson is also one of the country’s leading hemispherectomy surgeons. Used to treat intractable seizure disorder, the procedure entails removing or disconnecting one half of the brain. Despite the seemingly drastic nature of the operation, hemispherectomies have become fairly routine in the last 20 years, in large part because of the surgical-technique improvements by Carson himself and a very high success rate at leading hemispherectomy centers like Hopkins, UCLA, and the Cleveland Clinic. According to a 2003 study of pediatric hemispherectomies performed at Hopkins between 1975 and 2001, 86 percent of patients were seizure free or had only nondebilitating seizures after the operation and 89 percent could walk without assistance. Deterioration in physical or cognitive condition was exceedingly rare.

It was these statistics that drew the Greggs to Hopkins.

Laura Gregg was born in 1995 with a brain injury that caused significant delay to her intellectual development. When she was 2 she started having regular seizures. Laura’s doctors were unable to control the seizures with medication or diet, and warned her parents that if they continued she would likely suffer increased, permanent brain damage.

In November 1999, Laura was examined at Hopkins and deemed a good candidate for hemispherectomy. In a hospital discharge summary obtained by City Paper, attending physician Dr. Eileen Vining describes Laura this way: “She is quite verbal and has a fairly extensive vocabulary and is quite interactive and playful. She is able to pull to stand and cruise to some extent, but this is very limited due to the dysfunction of her right side.”

Laura underwent a complete left hemispherectomy by Carson in May 2000. At the end of that hospital admission, neurologist Dr. John Freeman wrote in a discharge summary that Laura had “an exceedingly benign postoperative course” and recommended speech and physical therapy “to the point where she is able to stand and walk without support.”

Several weeks later, Laura was recovering according to her doctors’ optimistic expectations. She was starting to “cruise” again; she relearned the word “mom.” Then, on the evening of June 24, Steven Gregg noticed something around the surgical incision on Laura’s skull.

“There was a large bubble on the top of her head that was leaking, and a kind of bloody, puss-y discharge,” he says.

This was the second time fluid had started leaking from the operative wound in the weeks following the brain surgery, and Gregg, fearing an infection, decided to immediately drive Laura back up to Baltimore, where she was examined by Carson.

“He said, ‘I’m concerned about infection getting into the skull. We need to go in now and figure out what’s going on,’” Gregg recalls of his conversation with Carson that night. “So I walked into the [operating] room with Laura. She was alert. She was afraid. She was looking at me.”

It would be the last time his daughter recognized him.

Carson emerged about an hour later, Gregg says. “He came out and briefed me. He said that he opened [the wound], didn’t see anything unusual, and that he irrigated it. He said there wasn’t anything he saw that should be of any concern”

Relieved, Gregg finally permitted himself some sleep, on a cot beside his recovering daughter’s hospital bed.

“The next thing I know,” Gregg recalls, “I’m being awakened urgently by a nurse and her telling me to get out of the way. She was trying to get a bag on [Laura] to pump air into her and she was calling to a nurse at the station to call the emergency team, the respiratory unit. People came running in from upstairs and they were all around her, pinching her.”

Though her breathing was eventually restored, Laura incurred that night “serious, permanent and disabling neurological and physical injuries and serious cognitive disabilities,” according to the complaint filed by attorney Schultz.

“We knew right away, though, that she wasn’t the same,” Gregg says. “She wasn’t looking at us in any way, she wasn’t responsive.”

Laura remained in Baltimore until July 8, while doctors monitored her progress, hoping she would get better. There was speculation among the physicians that the girl had suffered a stroke. As Laura’s condition failed to improve, Steve and Karin Gregg became increasingly distraught, they say, and pressed their doctors for an explanation.

“Our questions for [doctors Carson] and Freeman were, what would explain this global trauma?” Steve Gregg says. “And they said a stroke itself would not explain her general loss of cognitive ability and awareness. But we never got an answer as far as what would explain her condition.”

The Greggs continued to hope that Laura would snap out of her obtunded state, until their final consultation with Carson. “He pretty much said, you know, short of a miracle, that she would never improve,” Gregg says.

Hopkins maintains that Laura’s brain damage was caused by a stroke. In an e-mail to City Paper, a hospital spokeswoman writes, “Johns Hopkins sympathizes with the Gregg family over Laura’s having suffered a stroke, a known complication that can occur after surgery. Despite the tragic outcome, we remain firm in the belief that Laura received appropriate care.”

Now 9 years old, Laura lives with her parents and two younger siblings, both developmentally normal, in a prosperous subdivision in Northern Virginia. She has frequent seizures and is blind, incontinent, and fed through a tube in her stomach. Though she has the intellectual capacity of an infant, she’s otherwise physically healthy, her parents say, and is expected to live into her 30s. Which is one of the reasons the Greggs say they decided to sue: They will need financial help to continue caring for Laura long-term.

But the primary reason they reached out to an attorney, the Greggs maintain, was because they never felt that they received an adequate explanation from Hopkins doctors about why Laura’s outcome was so different from that of the average hemispherectomy patient. What had happened while Steve Gregg was asleep on that cot? How long had she not been breathing before the code team arrived? Should the nurses have been more vigilant? Why won’t somebody give them an answer?

Three months after Laura was discharged from Hopkins the Greggs started requesting her medical records in order to seek outside medical opinions about her situation. They say they were repeatedly told by hospital officials that the paper records had been misplaced and were unavailable.

The missing records only heightened the Greggs’ suspicions that something untoward had happened to their daughter while in the hospital. They decided to talk to an attorney.

Now that the threat of a lawsuit has finally turned up Laura’s records, Steven and Karin Gregg hope that the elusive papers can shed some light on why their daughter has been consigned to a lifetime of darkness.

And, though the Greggs’ legal strategy will likely shift to the substantive claim of medical malpractice, attorney Daniel Schultz says he may also try to convince a judge that Hopkins shouldn’t be let off the hook for taking four years to hand over a patient’s records.

“The lost records and the failure to produce them still may be of some significance,” Schultz adds. “Because the records were never made available up until now, we may be continuing to ask for relief as a technical defense.”

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