Magazine article The Exceptional Parent

Katie's Amazing Videoconferencning System

Magazine article The Exceptional Parent

Katie's Amazing Videoconferencning System

Article excerpt

Through state-of-the-art video computer systems, "Truste Kids" and their families can get medical consultations from home at a moment's notice and have fun on the side!

When 9-year-old Katlyn Webb treats guests to a tour of her home in Clifton, New Jersey, they get treated to see a unique sight. Along the way she points out the Beanie Baby collection that she shares with her sister Stephanie, introduces their pet cockatiel, Singy, and ends the tour with the centerpiece of her bedroom--a computer system with a small, digital PC camera perched atop the monitor. Though Katlyn takes pride in demonstrating, with her dad Dave, the cool games and programs on the computer system, she knows that the equipment is more than just a bunch of nifty gadgets. It is part of a videoconferencing network that serves as her 24-hour medical and social connection to the outside world.

Katlyn, called "Katie" by family and friends, has a Chiari malformation and a syrinx. From the time she was born, she has had to live with the effects of that rare condition in which her brain stem has grown into her spinal canal. She has syringomyelia and, as a result of this condition in which a cyst progressively damages the spinal cord, she has constant headaches as well as weakness and pain in her limbs. If left untreated, the chronic crowding of the brainstem and spinal cord can lead to serious consequences, including paralysis.

Over an impromptu pizza dinner, the focus of conversations were on Katie's "nth" surgery which would take place in the coming week. Katie, by now a hospital veteran, seemed oblivious to all the talk and concentrated her efforts on entertaining everyone with some music on the family piano. Her mother, Faith, laughs as she relates Katie's experience of being fitted with a halo brace. The halo brace keeps the head and neck in perfect alignment. The halo end is held in place around the head with screws which go through the rim and tighten into the head. "When her doctor needed to make some adjustments, it hurt her so much Katie teased him that if he did it again, she would do the same thing to him!"

Beyond the spunk and humor are the constant care and watchful eyes of every member of the Webb family, which also includes Katie's grandmother, a nurse. Each is well aware of the seriousness of Katie's disorder. In addition to family support and regular trips to Katie's pediatrician, Barry Prystowsky, MD, the family can also receive live medical consultation-at any time of the day or night via the video conferencing system. The entire system was donated by the Children's Emergency Medical Fund of New Jersey, Inc. (CEMF), a 501(c)(3) tax-exempt charitable organization dedicated to helping families of children with special needs requiring 24-hour supervision, who have been cut off from the necessary coverage by insurers.

"When I am really sick, Dr. Barry can see me and I don't have to go to the hospital. This is the best thing," Katie remarks about her videoconferencing system. "The worst thing is during the night, the lights have to be on for Dr. Barry to see me. I love Dr. Barry because he knows how I feel sometimes, and I really hate going to the hospital."

The "Truste Kids"

The CEMF, an affiliate of Quality Physicians Network of America and the New Jersey Pediatric Society, was established in 1998 by Dr. Prystowsky; Fran Reibman, CE, a biomedical/clinical engineer, and pediatrician Leonard Grossman, MD, and his wife Dora Grossman PhD, Esq. The organization seeks to make services and funds available within a 24-hour period so that, as Reibman puts it, "families can focus their attention on immediate medical issues rather than potential financial burdens. The Fund was established so we can treat, educate and advocate." Reibman explains that only pediatricians and pediatric health care professionals may access the "Truste." However, exceptions are made on a case-by-case basis. …

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