Creative care for kids

Rosalee Truelove, Rosie for short, is six years old. Her quiet personality comes to life as she wheels through the doors of the Anna Shaw Children’s Institute (ASCI). Terri Woodruff, MS, APRN, CPNP-PC, and Executive Director of the facility, kneels to greet Rosie and compliments her on the oversized bow pinning back her blond curls. Rosie’s mother, Jessica Truelove, rolls her pink wheelchair over to a kiosk where they check-in for her appointment.

Rosie was born 12 weeks early with a primary diagnosis of cerebral palsy. ASCI has only been open a few months, but Rosie’s medical history is well known to Woodruff, who was Director of the Neonatal Intensive Care Unit (NICU) at the hospital where Rosie was born. Her delivery marked the beginning of a friendship between Woodruff, Jessica, and Rosie.

The ASCI realizes a different vision of healthcare—one that relies on genuine relationships, not just routine appointments. The project began with Bob Shaw, founder of Shaw Floors, and his family making a very generous donation.

“Mr. Bob Shaw approached our executive leadership team and spoke to us about assisting with the operations of a building that could take care of children with differing abilities. His wife, Anna Sue, felt that all children should have the chance to develop their lives to the fullest potential,” Woodruff said. Their vision came to life as community members volunteered their time to be a part of the effort. Woodruff formed a board and advisory council of parents, educators, doctors, and therapists. Included in the committee was Jessica Truelove.

“We came together to voice what we felt the center needed based on our personal experiences from raising children with differing abilities. We wanted to ensure all families and community members could benefit from the institute,” Jessica Truelove said.

Ideas were shared by families, health care professionals, and children to shape what is now a groundbreaking institution in its design and care. Nancy Carnevale, MD, FAAP, or as Rosie says, “Fancy Nancy,” explains the value of creating a comfortable environment for working with patients.

“Kids are afraid of hospitals. The children we work with have complex illnesses, they have been in and out of the hospital since they were born. Poor little NICU babies and congenital heart babies have been poked and prodded their whole life. Why wouldn't they be afraid of the doctors? The fact that they don’t know that I’m a doctor here is incredibly beneficial,” Carnivale said.

This is why none of the doctors at the ASCI wear white coats, why none of the exam rooms have examination tables, and why the entire structure resembles a modern-day treehouse. The entrance to the building features a three-story tree that extends from the bottom floor up to the third-floor ceiling.

“Anna Sue Shaw was passionate about making sure all children have the resources they need to be successful. She called her children and grandchildren her little monkeys, so it's rather appropriate that we have a treehouse to honor her,” Woodruff said.

The indoor tree is just one of many impressive design features of the building. During the planning stage, the advisory council partnered with a program called Art Skills to build each room around a piece of artwork commissioned by a local artist. Imagine a room titled “Reliable Raccoon.” Leading up to it are silhouettes of raccoons along the wall and highlighted inside is a painting of two raccoons holding hands. 

It is impossible not to appreciate the playful nature of the entire space, inside and out. 

“We've had children come into our center and say, ‘I'm coming in to play with the Treehouse doctor,’ and that is precisely what we wanted,” Woodruff said.

For Rosie, her mother's input resulted in a state-of-the-art aquatic therapy pool, a treatment that allows her to move freely on a kickboard without having to fight gravity. 

Rosie’s physical therapist, Laurie McGee, PT, DPT, C/NDT, explains the progress they have achieved from her sessions. 

“When we initially saw Rosalee, she sat shifted to one side, and unless she was being supported, she had difficulty sitting alone. After a few weeks of working with us, she came in and said she was able to sit in a restaurant booth and eat her barbecue with the family at the table, instead of in her wheelchair,” McGee said. 

It seems small — the simple act of swimming or sitting in a restaurant booth — but as the saying goes, “It's the little things that matter.” For Rosie and her family, these successes are not little at all. They are life-changing. 

“Rosie is sitting straighter, she is standing straighter, and she's been able to take steps with an assisted gait trainer. It's been marvelous to watch her grow and develop, and see the excitement — not just on her face, but also on her family, her mom and her grandparents’, as she's able to complete these milestones we sometimes take for granted,” Woodruff said.

Rosie’s case is just one example of the holistic therapy approach ASCI uses with all their patients. 

“All of the services here are family-oriented, it’s not just about dropping your child off and sending them on their way. It’s ‘come back, let us work with your child, let us work with you, and let us work as a team to show you skills you can work on throughout the week,’” Jessica Truelove said. 

Carnevale reiterates the importance of therapy being a group effort between patients, families, and doctors. 

“We emphasize a major educational push to help parents understand that therapy is not just a 30-minute session. It’s going home and doing therapy over and over again,” Carnevale said.

Each room at the ASCI is equipped with a two-way mirror for parents to observe therapy sessions. This helps them understand their child's treatment and provides them with techniques they can take home and continue to practice. 

“Our therapy is not just about treating children. It’s about taking the time to work with families, too. It’s giving them suggestions and hearing them say ‘no one has ever said that to me before,’ or ‘those are some great ideas that we can easily incorporate into our day-to-day.’ Being able to take that burden away from families, so they can practice skills that they know are helping their child, instead of relying solely on us to fix them, is also empowering them as parents,” McGee said. 

Jessica describes the impact of this philosophy: “During and after the sessions, our therapists sit down and walk us through what we can be doing in our day-to-day to continue to make progress. Therapy is not only helping Rosalee, but our entire family is also benefiting from her care.” 

With ASCI, all healthcare providers and services are under one roof. For Carmen Martinez, the advantage of having everything in one location has had a direct impact on her child. 

Martinez carries her two-year-old daughter, Isla Romero into the ASCI. Isla is shy at first; she tucks her head into her mother's neck to hide. It takes a few minutes, but she begins to open up. Her fine black hair is tied up in two pigtails; her almond-shaped eyes squint a little as she smiles from ear to ear at the array of toys laid out in front of her. Isla was born with Down syndrome, and until a few months ago, she did not have the neck strength to support her head. 

As a single working mother, Martinez often faced the impossible task of choosing between providing for her daughter, or participating in Isla’s therapy, “Most therapy centers are open from 8:00 a.m. to 5:00 p.m., and that's when I work. One of the biggest challenges I have faced is that people are judgmental if I am not in therapy, they think ‘oh, she’s not involved’ or ‘is she really capable of taking care of her baby?’ Here, they accommodate my schedule, so I can come in at 5:30 p.m. or 6:00 p.m. and still be involved in Isla’s therapy,” Martinez said. 

In addition to offering convenience and family-centered care, the cross-departmental collaboration between health care providers and parents at the ASCI is inspiring a new method of treatment.

From doctors to social workers, ASCI operates as a team to improve the lives of patients and their families. 

“The fact that I can walk upstairs and ask our occupational therapist, ‘This child’s grip is like this, can you look at this handwriting sample for me and tell me what you think?’ Or if I suspect a child has an attention problem but could also have something going on with their language, I can go to our speech and language pathologist and get her input right away. I can walk from place to place getting immediate feedback; it’s just wonderful,” Carnevale said. 

The ASCI combines a diverse group of specialists with a human-centered approach to therapy. Children with differing abilities are unpredictable as they develop. The unknown is part of their evolution. Working as a team helps to anticipate the changing needs of patients, and visualize future treatments for each child as they continue to grow. The building even has a “Teamwork Room” to facilitate collaboration amongst employees. 

“I hope that this continues to be the cohesive team that it is and we can continue to provide care and support to treat patients and families as a whole. It's essential that our care is family-centered,” Woodruff said.

The work of childhood is play. Adolescence is a time for kids to learn how to make friends, share, and sing along to songs. At ASCI, play creates the context for examination, assessment, and therapy. 

“When I bring out the stethoscope, I let the child help, passing it back and forth, so they stay calm. This gives me a much better view because they are not in a state of fear,” Carnivale said. 

A child born with Down syndrome, cerebral palsy, or any other disability, is still a child. At times, the distractions of a silver, sterile environment can suppress the ability of a kid to be a kid. 

“Isla is a baby that's going to play, she’s going to cry, she's going to laugh, she's going to do everything any other baby would do. And she’s a lot more than an ornament. She has taught me to never limit her,” Martinez said. 

Rooted in Rosie and Isla are strength and resilience. Despite the challenges they face daily, both girls continue to have a positive spirit and contagious can-do attitude. 

“I want to be an artist. I think that's what I'm gonna be when I grow up. So I can make a bunch of pretty pictures of Sissy and Daddy and all my friends,” Rosie said. 

Though the ASCI is still in its infancy, it is apparent it has already begun to make an impact through tailored services, a unique vision, and heart. 

“We have lots of hopes and dreams for this place. The biggest is to continue to help children and families realize that life is a journey and that we can help them on their journey. To learn how important it is to celebrate the little things in life and to never take anything for granted,” Woodruff said. 

There is an art to caring that can make an unforgettable impression, and indeed, change lives.