Transforming Moments

Sarah’s Story

Sarah’s Story

Six-year-old Sarah loves Clifford, Elmo and anything red. She also loves pink and purple as evidenced by the colorful Disney princess TV/DVD/VCR set and fairy princess pillows and comforter decorating her room on Children’s Hospital’s Transitional Care Unit (TCU).

When Sarah was born, her mom, Janice, said “we thought Sarah was a healthy baby.” Janice’s pregnancy and delivery had been easy, and all of Sarah’s newborn tests showed normal results. Looking back, Janice now says she “knew something wasn’t right” when Sarah was one month old, but it wasn’t until Sarah got sick six months later that Janice learned her only child had cerebral palsy.

When Sarah was seven months, Janice recalled, she stopped eating and developed a high fever. A CAT scan showed the middle part of Sarah’s brain was underdeveloped, leading to the cerebral palsy diagnosis.

According to the United Cerebral Palsy website, cerebral palsy is characterized by an inability to fully control motor function, particularly muscle control and coordination. It is caused by damage to one or more specific areas of the brain and affects approximately 764,000 children and adults in the United States.

Finding Children’s Hospital

Sarah’s young life has been full of medical challenges. She’s had surgery to correct her crossed eyes, seizures that are now controlled with medication, and surgery to stop reflux and help her stomach empty faster. She also has a feeding tube and had multiple cases of pneumonia as an infant.

While Janice, a single parent, worked during the day, Janice’s sister took care of Sarah. But when Janice’s sister passed away suddenly in 2002, Janice was forced to turn to in-home nursing care. Because of the nation-wide nursing shortage, Janice said it was difficult to retain good care, and she wound up working round the clock to keep her day job and take care of Sarah at night. In addition, Sarah’s growing body was getting heavier, making it more difficult for Janice to lift and move Sarah without hurting her back.

Janice first learned about the TCU from one of Sarah’s home health nurses, who had a son on the TCU. Janice put Sarah on the waiting list for one of the TCU’s 23 beds in June 2004. Sarah arrived nine months later.

Transitional Care Unit

Children’s Hospital’s TCU serves children from birth through age 21 who require a high level of specialized nursing care yet no longer need acute hospitalization. The TCU first opened in 1999 with 12 beds and expanded to 23 beds in 2002. It provides comprehensive, family-centered care and access to an interdisciplinary team of pediatric specialists. TCU services include assistive technology, nutrition, psychology, nursing and physical, occupational and speech therapy.

“She’s like a different child,” recalled Janice of her happy, pigtailed daughter’s change since arriving on the TCU. While Sarah used to cry for days on end at home, Janice said she hasn’t had any crying spells since coming to Children’s. She’s also learning to communicate and experiencing many new activities.

New Adventures

During the school year, Sarah, a first grader, attends school with other TCU children. Her teacher, Ruth Sangiuliano, MEd, is teaching Sarah how to use a single-switch device to speak for her. When Sarah wants to say hello, she hits a switch with a picture of a hand waving to hear the pre-recorded words “hello.” Other words and phrases can be programmed into the device based on the picture on the card.

Sarah spends weekday mornings in school, learning about communication, language arts and literature. She loves the “ABC” song and just finished reading “The Little Old Lady who isn’t Afraid of Anything.” She sees a music therapist twice a week. Sarah’s days also include occupational, speech, physical and recreation therapy, and Fridays mean trips with the Education and Recreation Therapy departments.

Janice loves the outings and tries to attend whenever possible. Sarah’s been to the State Fair, horseback riding, the Rappahannock River and Virginia Beach. Janice keeps a disposable camera in Sarah’s room so her caregivers can document Sarah’s adventures when Janice isn’t there.

Vernita Easley, CTRS, Certified Therapeutic Recreation Specialist, said outings are designed to “integrate children into the community” and promote interaction in various activities with others outside their living environment. In addition, community outings provide children opportunities to respond to different stimuli that promote a response from tactile or auditory stimulation. Vernita said Sarah responds well to outings with lots of sensory stimulation, whether it’s putting her toes in the sand during her first visit to the beach or swimming in the Rappahannock River.

Vernita and Ruth are two members of Sarah’s medical team. Team members are in constant contact with one another to ensure that individual therapy goals are incorporated into other therapies and activities. Even though Sarah is on the TCU, Janice is an integral part of the team, attending monthly team meetings and assuming Sarah’s care during her daily visits to the hospital.

“We make a real effort to accommodate parents,” said Pat Anderson, RN, BSN, CRRN, Director of Nursing for the TCU and Inpatient Clinical Coordinator. “Our parents are the experts and help us to deliver the best care. We want to help them feel connected and a very important part of their children’s lives.”

Staying Involved

TCU families also stay involved through weekly support suppers, TCU Family Days and “The Transition Edition” newsletter, which is sent to TCU families six times a year and includes articles about the hospital and TCU, new staff, upcoming activities and photos from special events. Held four to five times a year, the Saturday TCU Family Days provide opportunities for families to socialize and enjoy activities like movies and ice cream, cookouts or holiday meals.

Ruth keeps Janice involved by calling or sending a letter about Sarah’s progress at least weekly. In addition to teaching Sarah how to use a computer, Ruth, with the help of Sarah’s physical and occupational therapists, is teaching Sarah how to sit up without support, tolerate food by mouth and reach for toys.

Before Sarah came to the TCU, she received early intervention services through Henrico County and saw multiple physicians for her complex medical needs.

The coordinated care is one of the biggest advantages of the TCU, said Eugenio Monasterio, MD, FAAPMR, Director of Outpatient Rehabilitation. “Since [Sarah’s] been here, we know exactly what she’s doing. For her family, that means less running around.”

Janice can’t say enough about her pleasure with the TCU. “When you have families willing to move to Virginia to get into this Children’s Hospital, you know you have a good place.”

Sarah clearly agrees. Her smile and good nature have won over her doctors and therapists.

“Sarah is such a happy child,” said Dr. Monasterio. “You can’t help but crack up when you see her.”

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