Using technology and teamwork to help special kids

It is often said that it takes a village to raise a child. When that child has special health care needs, it takes a special team working together to ensure that the child has the best care possible.

A chronic illness involves not only the patient and the illness, but also the medical system, family caregivers and the community. Each one must make adjustments for the patient.

For Dr. Susie Gerik, a desire to give these children more quality time fuels her work in this challenging environment.

Dissatisfied with private practice, Gerik joined the Division of Children’s Special Services at the University of Texas Medical Branch at Galveston in 1998, and she is now the director of the program.

Special services for special patients

UTMB Children’s Special Services treats children with special health care needs such as chronic physical or mental conditions. Many of these children are considered medically fragile and are dependent on medical technology, including home ventilators.

UTMB Children’s Special Services treats children with special health care needs such as chronic physical or mental conditions. Many of these children are considered medically fragile and are dependent on medical technology, including home ventilators.

Common conditions include cerebral palsy, genetic disorders, developmental delays, seizure disorders, gastroesophageal reflux, feeding disorders and spina bifida.

Gerik encourages referral to CSS as soon as a health care provider has determined that a child has a chronic medical condition and is in need of comprehensive care and coordinated services. Once accepted for treatment, Gerik’s team provides both inpatient care and outpatient clinic care for those children who need it.

An interdisciplinary team

CSS is unique in that it encompasses aninterdisciplinary team of physicians, nurses, occupational therapists, physical therapists, speech therapists, dieticians, schoolteachers, chaplains, child life specialists, psychologists, social workers and secretaries.

The core team works with specialists in other fields as needed. Gerik says that ongoing communication through team meetings ensures the highest standard of coordinated care.

“We all communicate so well because we all want to provide the best care for these kids,” Gerik said. “We see some of the most heinous suffering you can imagine — that you probably couldn’t even imagine — and yet we all love our jobs and we’re happy to be here.”

Team members also work closely with other services including pediatric radiology, pharmacy, orthotics and biotechnology.

Children born with developmental disorders are cared for by the staff of the Children’s Restorative Care Unit, which comprises an inpatient unit and a number of outpatient clinics serving over 1,000 children throughout Texas.

The team of pediatric therapists serves infants and children hospitalized in the CRCU, Infant Special Care Unit and children seen in UTMB pediatric clinics. The patient population ranges in age from birth to 17 years, although there are a few older patients who have grown up in the program.

Therapists assist patients in special “wheelchair clinics,” where they evaluate, fit and order wheelchairs for pediatric patients. They provide repairs, replacements, adjustments, handicapped parking and other equipment orders. The interdisciplinary team exists to plan, deliver and review the care that is provided to patients.

Gerik views the team as consultants in the support of the “medical home” for children with special health care needs. “There’s a real collaborative spirit here,” Gerik said.

Family-oriented care

According to Gerik, it is common for families to have periods of instability during a child’s illness. “In long, protracted illnesses, even the best-adjusted families can become overwhelmed and need help,” she said.

Family tasks can include understanding the disease, helping with medical, nursing and nutritional needs of their child, helping with their child’s physical needs, supporting their child emotionally, utilizing community resources and communicating with the medical team.

Gerik says her team tries to be honest and realistic with the families. “It’s important to have family meetings to discuss the protracted course of an illness, which can include chronic maintenance, acute exacerbations, slow deterioration and eventual death,” she said. For those children with terminal illnesses, UTMB Children’s Hospital offers palliative care through its “Butterfly Program,” which supports families of children progressing though the end stage of their illness.

The CSS team occasionally puts families in contact with other families who have gone through similar experiences.

The team assists in developing a routine for each child, supports the main caregiver emotionally, helps the child maintain as much independence as possible, encourages family rituals and traditions, teaches the caregiver and patient to prevent complications and adjust to having “outsiders” come into the house.

“It’s challenging, but it can be so fulfilling to see how different families cope,” said Gerik. “It’s such a distinct privilege to walk along somebody when they’re in crisis.”

Telemedicine and the community

Many of the children with chronic conditions are graduates of the ISCU and live in outlying areas of East Texas. Until recently, they and their families have made the long and often expensive trip to Galveston, many of them with supportive equipment.

Telemedicine has greatly reduced the burden on families of children in rehabilitative care. Dr. Sally S. Robinson, medical director for UTMB Children’s Hospital and former CSS director, has promoted telemedicine at UTMB since 1996.

Using two-way, interactive audio and video technology, primary care physicians and nurses in Beaumont and Nacogdoches can present their patients via secure transmission lines to a team of specialists at Children’s Hospital for evaluation. Results of numerous tests are available immediately to doctors at both sites, and the clinics allow CSS to determine whether a child needs to be brought in for treatment.

Two telemedicine sites in southeast Texas school districts and a third at Stephen F. Austin State University provide ongoing direct patient consultation and education for school personnel through the telemedicine program.

The entire pediatric rehabilitation team attends these monthly clinics, and as many as 20 patients can be seen each month.

UTMB continued to enhance its link with communities. Team members are refining a comprehensive, interdisciplinary medical record that will be provided to caregivers and primary care providers. They are also contacting community providers to determine how UTMB can assist them in the care of their special needs patients.

The goal is to provide comprehensive care linking the hospital, primary care providers and school districts to provide the best, most efficient support for these children.

“We strive to establish an environment in the home and the community to allow the child to reach his or her highest potential,” said Gerik. “There’s a big magnifying glass on the victories.”