Until recently, Children's Hospital treated children only within its walls. But some kinds of care have been transferred to the home, where parents can take an active part in the treatment.
My associate, Annie Koch, took a look last week at a program that "heals on wheels" -- and at a family that has been helped considerably by it.
James Edward Addison lies on a quilt on the floor. He is wearing navy blue overalls, a navy blue turtleneck and white baby shoes. He lies almost still, moving only occasionally, but watches everything around him with huge brown eyes. The only sound he makes is a soft gurgle as he breathes.
A few feet away, in a crib, stands his twin sister, Janell Elizabeth. She, too, is wearing overalls and a turtleneck. But she is bigger than James and far more active. She jumps up and down, laughs and screams and tugs at her barrettes.
The Addison twins will be a year old on Dec. 30. But they are very different.
Janell has always been healthy. She weighed 6 pounds, 10 ounces at birth.
James was born with Treacher Collins Syndrome, a genetic disorder that disfigured his lower jaw and caused feeding problems and a profound hearing loss. James was also born with respiratory complications. At birth, he weighed only 3 pounds, 12 ounces. Thanks to the Home Care team at Children's Hospital, however, there is a good chance that James will grow up to lead a normal life.
For Ethel Addison, a tall woman of 31, the last year has not been easy. She is a single parent living in Southeast Washington with her mother and her two young children. She has not been able to go back to work since the twins were born because motherhood has been so trying and time-consuming. She is on public assistance.
But the most difficult part of her life has been taking care of and worrying about James.
After the twins were born at Providence Hospital here, James remained in the intensive care unit for six weeks. Then he was transferred to Children's Hospital for further treatment and evaluation. After five weeks at Children's, James was ready to go home.
But he still needed medical attention once he got there, and his mother needed to learn how to give it to him. So doctors at Children's recommended the Addisons to the Home Care team.
The Home Care team was formed in September 1981 by Gloria Eng, chairman of physical medicine and rehabilitation, and Ruth Bock, who now heads the group. The project was conceived to teach families of children with multiple handicaps how to care for them after they go home from the hospital.
If a child is referred by a doctor to the Home Care team, a member of the group will call his family or pay them a visit. "We go on their turf," says Bock.
In addition to teaching health care, the team helps these families find the proper schools and pediatricians or community health clinics. The goal of the Home Care program is to keep the cost of health care down and to keep Children's as free as possible for more urgent medical emergencies.
The program is designed to show parents that they are capable of keeping their kids healthy, Bock says. "We believe in children going home," she says. "The family deserves to be in control."
The Home Care team consists of eight women between the ages of 24 and 35: a director, an education coordinator, a social worker, two nurses, an occupational therapist, a physical therapist and an office coordinator. The team is now working on 20 cases, but it can handle as many as 30 at a time. In its first year, the group worked with 79 families.
"We all believe very much in what we do," Bock says. "You can't do this kind of work and think of it as a job. This is a career. We are all really turned on by what we're doing."
In the case of the Addisons, the Home Care team has provided medical assistance to James and emotional support to his mother.
After James went home from the hospital in mid-March, members of the group visited the Addisons twice a week for six months. Connie Lierman, one of the two nurses, and Maria Ortiz, the group's physical therapist, explained to Ethel Addison how normal babies develop, so she could be on the lookout for signs of trouble in James.
They showed her how to hold a bottle to allow James to eat comfortably. The Treacher Collins Syndrome prevented James from closing his mouth properly, which made normal feeding difficult. Lierman and Ortiz also demonstrated how to exercise the muscles in James's neck, which were extremely stiff after he was born, and what to do in case James stopped breathing in the middle of the night.
Meanwhile, Nanci Weinstock, the team's social worker, did what social workers usually do. She arranged transportation for the family and helped obtain welfare benefits and legal advice. But Weinstock served in another important way: she was a shoulder for Ethel Addison to lean on. Addison admits today that there were times when she "really needed someone to talk to."
"I was definitely scared," she remembers. "The Home Care team made me more relaxed. I didn't know what to do for James ; I didn't know if I was hurting him."
The Home Care team stopped visiting the Addisons on a regular basis in October. Now his mother takes James once a week to the Parent Infant Program at Children's, which is run by the Speech and Hearing Center.
James was born with a severely limited sense of hearing. His mother plans to learn sign language, and Weinstock is prepared to help her do it.
The hearing loss aside, Dr. Kenneth Rosenbaum, director of clinical genetics at Children's, is hopeful that, given proper care, James Addison will grow into a healthy, normal individual.
Ethel Addison says that the year of looking after James and learning about his special needs has made her stronger. She thinks of the members of the Home Care team as "life savers."
She also feels good about herself. "I'm proud of myself," she says. "James has come a long way from the beginning.