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The Record (Bergen County, NJ) December 26, 1999 | ZENAIDA MENDEZ, Staff Writer ZENAIDA MENDEZ, Staff Writer The Record (Bergen County, NJ) 12-26-1999 DIGITAL GUARDIAN ANGEL — CHRONICALLY ILL CLIFTON GIRL GETS MEDICAL CARE VIA PC By ZENAIDA MENDEZ, Staff Writer Date: 12-26-1999, Sunday Section: NEWS Edition: All Editions — Sunday

Katlyn Webb has at least a dozen computer games — her favorite a Barbie mystery game — and her shelves are lined with cartoon movies and books.

“I wanna check it out!” exclaims the little girl as she explores a mansion in the Barbie game.

But Katie can’t enjoy the game for too long.

“I get a headache,” she explains.

That headache has been a common experience throughout her 9-year-old life — one of the symptoms of a condition called Arnold Chiari Malformation.

But the computer, while causing her discomfort if she plays for too long, also is her potential lifesaver — her link to medical experts around the world.

In March, the Clifton girl was the first recipient of a video-conferencing program from the Children’s Emergency Medical Fund of New Jersey — a non-profit organization providing medical services and supplies to children who have been cut off by their insurance providers.

A small, portable digital camera positioned atop the computer monitor allows doctors to observe Katie remotely, just as she uses the computer to tap into the rest of the world.

Since birth, Katie has battled the effects of the extremely rare condition, in which her brain stem has grown into the spinal canal. In addition, she has syringomyelia, a disorder in which a cyst progressively damages the spinal cord. Its ongoing effects include pain,

weakness of the limbs, and headaches.

Katie had her first surgery at 6 months old — an effort to relieve heart and sleep problems. But those problems persisted, and at age 3, Katie was diagnosed with ACM. here arnold chiari malformation

Despite the severity of that diagnosis, it gave hope to Katie’s parents, Faith and David, because finally they knew what they were dealing with and “because we thought we could stop the progression of the disease,” her mother recalls.

But that relief was short-lived. The family soon found out that Katie would battle her handicap for the rest of her life.

“We found it [more surger y] could only stop the immediate symptoms and increase the quality of life,” said Faith Webb. “There is no cure.”

Six years and 15 surgeries later, Katie appears stable. Two operations this summer — brain surgery to remove a bone from the back of her neck and a second operation to relieve pressure on the brain and spinal cord — gave her the ability to stay awake longer and be more alert.

But Katie still requires 24-hour home nursing care, and her parents constantly and unsuccessfully battled insurance providers to get it.

The girl’s physician, Nutley pediatrician Barry Prystowsky, teamed last year with Fran Reibman, a former clinical engineer, and Netcong pediatrician Leonard Grossman to start the Children’s Emergency Medical Fund. Through that fund, they came up with a computer program featuring a movable, digital PC camera to allow medical experts to look in on their patients at any time and the family to get live medical consultation on a moment’s notice.

Prystowsky said the program is the result of necessity.

“We are at a point in the insurance coverage of children’s health where the insurance companies are unstable,” he said. “They are in a merger-and-bankruptcy market and are not willing to freely give children all that they need.”

CEMF video-conferencing participants, called “Truste Kids,” receive computers, the digital camera, and the software at no cost. A child is eligible if identified by a physician as requiring 24-hour supervision but cut off by insurers from the necessary coverage.

Katie’s parents and sister, Stephanie, 13, can request help quickly just by clicking on the name of a participating medical practitioner on the list programmed in Katie’s computer.

In one instance, Katie developed an infection in the feeding tube inserted into her stomach and the area started to bleed. Her mother logged onto the video conferencing system, and a “knock-knock” sound immediately alerted the managing team — nurses, physicians, and other practitioners registered with the Quality Physicians Network and linked through computers in their homes or offices.

Prystowsky instructed Katie’s mother to place the video camera in front of the infected area so Prystowsky could get a picture and determine if Katie needed immediate treatment. In that instance, she did and was taken to the hospital.

Had he not being able to attend to her, Prystowsky could have

Another time, Katie had an infection, but after an examination through the camera, Prystowsky decided she did not require immediate hospitalization. Instead, her mother was instructed to position the portable camera so that it scanned the problem area on Katie’s body as she slept that night so the managing team could observe it.

The program is a step forward in home nursing care, but Prystowsky cautions that the technology is not a replacement for hands-on service.

Rather, it gives doctors and patients the chance to communicate quickly and set a course of action. Ideally, it’s a support system for those with a home nurse.

“It’s not a substitute [for home nursing], but it does increase the quality of care by allowing me to see what she [a nurse] is looking at,” Prystowsky said. “We just want to help these kids.”

Reibman is enthusiastic, describing the program as novel, a timesaver, and, most importantly, a potential lifesaver.

“To my knowledge, this hasn’t been done before,” she said. “The alternatives up until now have been succinct — call a doctor or try to get an ambulance. Even if you succeed in getting through to the ambulance, by the time the ambulance shows up and gets the kid to the hospital, forget it.”

Although monitoring patients through a computer is not a common practice in the medical community, the idea is not a new one. Throughout the 1990s, there have been programs to monitor adult patients’ vital signs or mental health through phones or televisions.

Reibman spent about five months developing the video-conferencing system in her home. She and the monitoring medical practitioners deal with four children participating in the program.

Katie will participate as a Truste Kid as long as she needs 24-hour care. Prystowsky — who said Arnold Chiari Malformation is so rare he expects never to see more than one or two cases — added that there is no reason to think a person with the disease would not live a normal life span. He said the two surgeries in June stabilized Katie’s condition, and he expects that will continue to be the case unless pressure builds again at the base of her neck. website arnold chiari malformation

With her brain and neck still healing from the surgeries, Katie must wear a neck brace indefinitely. After it is removed, she will have to wear a protective neck support whenever she travels in a car.

Katie cannot stand or walk for long periods of time because her legs begin to hurt. For the past two years, she has received part of her nourishment through a feeding tube in her abdomen, and she will use it until she can consume and digest food on her own.

“It’s like a whole relearning experience — learning to eat,” her mother said. “She’ll get pains in her stomach and not know that those are hunger pains.”

Katie also works with a tutor and a speech therapist each weekday and with a physical therapist several hours a week.

And because of the risk of infection, she cannot go out often and has few friends. She hasn’t attended school the past two years.

For now, her social life revolves around what time her family gives her. Her father often spends the evening playing a Blue’s Clues or Barbie computer game with Katie. Her mother says proudly, “She puts me to shame with the computer. That is her thing.”

And that gives Reibman hope that the video-conferencing system can be used as another kind of lifesaver, allowing lonely Truste Kids to connect with schools, participate in video classes, and interact with other children.

“These kids are really isolated,” Reibman said. “The computer is a way of allowing these kids to be a total person, bringing the child back to the world and bringing the world to the child.”

Illustrations/Photos: 5 COLOR PHOTOS – PETER MONSEES / STAFF PHOTOGRAPHER – 1 – Nine-year-old Katie Webb, right, playing with sister Stephanie, 13, while at McDonald’s for lunch. Katie has a medical condition that greatly limits her mobility. 2 – Katie, top center, sister Stephanie, left, and friend Josie Mosloskie playing computer games. 3 – Above, mom, Faith, left, soothing Katie before flu shot is given by nurse Myra Montalvo. 4 – Right, stylist Joanie Breijo cutting Katie’s hair. 5 – Katie Webb of Clifton playing with Singy the cockatiel. 6 – PHOTO – PETER MONSEES / STAFF PHOTOGRAPHER – Katie Webb leaving the doctor’s office with her mother, Faith. Katie, who loves playing with computers, has her health monitored by one.