Transforming Moments

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.

Page 1 of 2  1 2 >

Back to Transforming Moments

The information on this site is provided for informational and educational purposes only; it does not contain specific medical advice. If you have specific health questions or problems, consult a health care professional for personal medical advice.