Expanding patient care

St. Jude Children’s Research Hospital feels like a second home to Khirsten, 12, and her sister Kaitlyn, 7, who have come to the hospital for treatment of sickle cell disease since they were born.

The girls are intimately familiar with the halls and clinics of the hospital from years of regular visits to manage their condition, an inherited disorder affecting red blood cells that can cause anemia, pain and organ damage.  About one in 365 African-American children is born with the disease, and St. Jude has one of the largest pediatric sickle cell programs in the U.S. 

Sisters Kaitlyn (left) and Khirsten have come to the hospital for treatment of sickle cell disease since they were born.

The girls’ father, Chris, now uses his knowledge as a St. Jude parent to help make the hospital even more friendly to families who turn to St. Jude for care. Chris, who also works at St. Jude, is a member of the St. Jude Family Advisory Council, which collaborates with hospital administration to foster family-centered care. In that capacity, he has become an integral resource for the hospital’s design and construction projects, including the new Kay Research and Care Center that recently opened three new patient floors for children who are inpatient at St. Jude.

Walking onto the new patient floors is like stepping into a child’s storybook. Each floor has a theme — nature, the ocean and outer space — reflected on a 90-foot “Journey Wall” that offers interactive areas for patients to explore. On the fourth floor, a large screen covers one wall and curves into the ceiling in a space called the “Imagine Room,” where patients can virtually interact with a video game. The screen can also be used to watch videos, enjoy interactive light displays or Skype with friends and family.

Each of the new patient rooms is more than 50% larger than those previously in use and adjoins a parent room. Both rooms have a full bath, and the patient room has a lighting system that enables patients to adjust their room lights to different colors. All three patient floors are assigned their own chaplain, and each has their own Child Life room, conference room, compassion fatigue room, staff lounge and family lounge.

“I am proud of the time and effort that went into making this project what it is, and grateful to St. Jude. Parents are actually the ones spending the majority of the time in this area, working to help take care of their children. So the fact that St. Jude will allow us as parents to have this major level of input is just phenomenal.”

Chris, member of the St. Jude Family Advisory Council