Once upon a time — not so very long ago — there were few doctors outside the ranks of pediatricians who treated adults with cystic fibrosis, Down syndrome or spina bifida. That’s because there were few adult patients with those congenital conditions. Most died in childhood or in their teen years. Very few survived to adulthood.
That has changed. Advances in science and medicine have led to dramatic increases in life span for patients with these conditions. Within the past few years, the University of Alabama at Birmingham has opened adult clinics for cystic fibrosis and Down syndrome. The most recent adult-transition clinic is for adult patients with spina bifida.
Spina bifida is a congenital disorder in which the brain or spinal cord, and/or their protective coverings, fail to develop properly due to the failure of the fetus’s spine to close during the first month of pregnancy. The resulting nerve damage is permanent, leading to varying degrees of paralysis of the lower limbs.
“It is now the norm for our kids to go on to adulthood,” says Jeffrey Blount, M.D., a pediatric neurosurgeon with UAB and Children’s of Alabama. “There are still challenges to be sure, but we are seeing the majority of our kids now making it through adolescence and going on to require adult care.”
Which begs the question: Where will they go? Children’s of Alabama hosts one of the largest, most comprehensive spina bifida clinics in the nation. But it’s designed for and focused on children — not adults.
“We had this aging population of patients with spina bifida that did not have good access to adult health care,” says Betsy Hopson, director of the Children’s and UAB clinics. “It really wasn’t suitable to see them in a children’s institution anymore.”
Blount and Hopson turned to UAB, where the Department of Physical Medicine and Rehabilitation had begun seeing a few older spina bifida patients for rehabilitation. But for most patients, rehab expertise isn’t the only need. Most require the care of urologists to guard against renal failure, a common complication. Many spina bifida patients have a shunt draining spinal fluid from the brain and need to be followed by neurosurgeons.
The adult spina bifida clinic, housed in UAB’s Spain Rehabilitation Center, brings the three key specialties together in one place, and can tap into the rest of UAB’s medical expertise as needed.
“It’s one-stop shopping for a patient. They go into an exam room and see neurosurgery, urology and rehab medicine,” says Hopson.
Hannah Vines, a 21-year-old spina bifida patient from Chilton County, recently made her first visit to the adult clinic. Although Vines was hesitant at first to leave the familiar setting of Children’s of Alabama, Blount and Hopson — who work at both clinics — were familiar faces. Since Vines is in a wheelchair, she and her mother, Cynthia, appreciated the fact that her physicians — Blount, urologist Keith Lloyd and rehab physician Danielle Powell — came to her, saving a difficult trek to different offices.
“We try to continue the effort of what’s going on down the street at Children’s, while smoothing that process to adulthood,” says Blount. “A lot of it is an assurance of continuity of care. What we do on a very practical basis is mostly sit and talk with patients, looking for signs of trouble, and making sure that they are not subtly declining in a way that could be a warning sign of something more serious.”
For Kaylan Dunlap, it was her first visit ever to a comprehensive spina bifida clinic. The 44-year-old grew up in northern Alabama and saw physicians in Chattanooga as a child. She now works for an architecture firm on Americans with Disabilities Act compliance issues. Dunlap says the clinic is a major improvement.
“I haven’t been weighed in years,” she says, “since most doctors’ offices lack the facilities to weigh someone in a wheelchair. Or they have exam tables that are too high to get up on. They are doing the little things here that can make a big difference.”
According to Blount, the UAB clinic is one of less than 10 adult spina bifida clinics in the nation. The next closest one is in Chicago.
“We are well ahead of the national curve,” he says. “Many big medical centers are struggling with this issue of transition. I think it’s been beyond anybody’s expectations as far as how rewarding the patients have found it.”
“We’ve transitioned about 100 patients so far,” reports Hopson. Last year saw a major milestone, she says, because “2011 was the first year that we actually transitioned more patients into adult care than we had new babies with spina bifida being born.”
Hopson expects the adult clinic to continue to grow.
“While some patients are resistant to change, there is another group who are tired of seeing cartoon characters on the wall and are ready to go to an adult facility, be treated like an adult and begin taking ownership of their own health care,” she says.