After lifesaving treatment at Texas Children’s Hospital, a child goes home. But for medically complex children – those with extensive needs for health services, who may experience functional limitations and be dependent on technologies such as respirators and feeding tubes – the medical journey doesn’t end.
“These patients need ongoing, highly coordinated care,” said Heather C. Moore, MD, chief of the Complex Care Clinic at Texas Children’s and assistant professor of pediatrics at Baylor College of Medicine.
“Their parents are basically running a hospital room in the child’s bedroom. They may have ventilators, feeding equipment and all sorts of supplies. That requires a tremendous amount of paperwork and care coordination. Many of them have home nursing. That requires physicians and other ancillary clinicians who are familiar with home nursing, who are able to interface with the nursing companies for therapy.”
The Complex Care Clinic at Texas Children’s is there to help. Located at the hospital’s campuses in the Texas Medical Center and West Houston, the clinic serves as the primary care physician office for routine visits, after-hours care and referrals to specialists. Each patient is assigned to a care coordination team, which includes a nurse care coordinator and a patient navigator.
For Alaine Hinds, whose daughter Rebecca, 19, is a patient at the Complex Care Clinic, the clinic has been an enormous help.
Born with cerebral palsy, Rebecca uses a wheelchair, is legally blind, wears hearing aids and has speech impairment. Three years ago, she became septic after undergoing surgery for scoliosis. After Rebecca had been discharged, Alaine knew something was wrong, and she took her to the Complex Care Clinic.
“That’s the day Dr. Moore saved my daughter’s life,” Alaine said.
Moore ordered testing that revealed a serious infection, even though Rebecca did not have typical symptoms of infection.
“It’s because she believed me, and even more, she listened to me,” Alaine said.
Unlike many patients, who go from the Neonatal ICU directly to the Complex Care Clinic, Rebecca was referred when she was 16. Leaving the hospital after her bout of sepsis, Rebecca was accompanied by additional medical equipment, an NG (nasogastric) feeding tube and PICC (peripherally inserted central catheter) line for IV therapy. Oxygen, a suction machine and BiPAP (bi-level positive airway pressure) for breathing support came soon after. Although the hospital staff explained how to use everything, following through at home was challenging. The team from the Complex Care Clinic provided a welcome refresher of instructions.
“They explained it in a way that was easier for Rebecca’s older sister and me to understand and let us know that they were there behind us when we needed help. When it got to the point where it was just too much, and I wasn’t getting any sleep, they were able to step in and get nursing,” Alaine said.
With more than 1,300 patients, the Complex Care Clinic is on call 24/7 to help problem solve and try to prevent hospitalization. When a patient does have to go to the Emergency Room, a clinic staff member escorts the patient there or calls ahead, so the patient does not have to wait to be seen. When a specialist is needed, the clinic schedules the appointment.
“We have the privilege of taking care of these children once they go home and of being a part of their lives outside the hospital,” Moore said. “We’re just as much a part of the child’s Texas Children’s Hospital experience as the inpatient units are. It’s an ongoing, very rewarding relationship for us.”
Jo-Ann Archer depends on the clinic to help care for her adopted son, Demetri, 5, and three foster sons, Bill, 12, Jim, 13, and Mike, 16.* All four have special needs.
Bill is the most medically fragile, according to Jo-Ann, who is a nurse with 27 years of experience. He has polymicrogyria, a condition in which the brain has too many folds, and the folds are unusually small. The condition impairs mobility and causes seizures, which are difficult to control. Bill is visually impaired and requires a feeding tube.
All four of the boys use wheelchairs and have special beds. Demetri’s bed is padded on all sides because he bangs his head as a result of a brain injury as a baby. Bill’s bed is fully enclosed in mesh so that he can’t fall out during a seizure. Jim, who has a mitochondrial disorder, has mesh on the sides of his bed. And Mike, who has cerebral palsy, uses a hospital bed.
The three youngest have feeding tubes and are incontinent. Each has a nurse 80 hours a week to bathe him, feed him, turn him, and administer breathing treatments, medication and exercises. Mike attends school full-time, and Demetri goes to school half a day; teachers visit several times a week to home-school Bill and Jim.
With so much complex care, Jo-Ann sometimes goes to the clinic four or five times a week, or even twice in one day. She especially values the organization and teamwork.
“When I take my kids there, I don’t just see the doctor. I see the dietitian; I see the care coordinator. And they’ll ask me, ‘Is there anything else we can do?’ Sometimes I forget to ask for things, but they’ll remind me. I like that everybody comes together, not just for one of my kiddos, but for all of them.”
The clinic staff works on building a sense of community for the families, including activities outside the medical realm. For example, the clinic partners with One Step Closer Foundation, a philanthropic organization, to hold an annual Halloween costume party.
“The families feel safe coming because the Emergency Room is just down two floors,” Moore said. “We have all kinds of activities, music, games and face painting. We do trick or treating through the clinic. The party is open for families, siblings, parents and nurses, whoever wants to come. It allows families to see other families that look like them.”
Another annual activity is a resource fair, featuring community organizations like United Way and the Deaf-Blind Multihandicapped Association of Texas, as well as refreshments, games and other activities.
“What I found with the Complex Care Clinic is that we’re partners,” Alaine Hinds said. “On top of being caring and compassionate, they have empathy. Anybody can feel sorry for you, but it takes someone special to truly try to put themselves in your shoes and feel what you do. I can’t tell you how much I value the fact we always talk about what Rebecca can do, not about what she can’t do. For me, it is all about Rebecca having a good quality of life and enjoying things to the best of her ability. I know that Dr. Moore supports that.”
Part of partnering with patients’ families is helping to prepare for the patients’ transition to adult care.
“Most of our children are not going to live independent lives. We focus around the family transition – what does it mean for the family to move from the pediatric world to the adult world? It’s very anxiety provoking for a lot of families to think about transitioning to the adult health care world,” Moore said.
The clinic has developed a transition readiness pathway, in which two physicians from Baylor’s adult special needs clinic meet with children and families in the Complex Care Clinic once a week, beginning when the children are 14 years old. By the time a child transitions at age 20 or 21, the family knows what to expect and is no longer frightened.
With planning and coordination, the transition to adult medical care is smooth and seamless.
For children with complex medical needs and their families, the clinic provides comprehensive care and support to make life easier over the long term.
*The names of the foster children have been changed to protect their privacy.