From Child to Adult: Meeting the Needs of Spina Bifida Patients

Spina bifida, which historically claimed the lives of its patients at an early age, is now being managed through better education and treatment, according to William P. Waring III, MS, MD, Medical College of Wisconsin Assistant Professor of Physical Medicine and Rehabilitation.

"Years ago 90% of children born with spina bifida died by age one," he says. "Now, 85% percent of them are living to become adults."

Spina bifida is a condition in which the neural tube - the part of the fetus that forms the brain and spinal cord - does not completely close. It is the most common neural tube defect in the United States, affecting 1,500 to 2,000 of the more than 4 million babies born in the country each year.

Spina bifida can present a challenge for our health care system, says Dr. Waring, who practices at the Froedtert & Medical College Rehabilitation Medicine Clinic - West. Primary care doctors may find it difficult to recognize the unique problems involved in the care of spina bifida patients and to adequately treat all their requirements.

Many individuals with spina bifida need assistive devices such as braces, crutches, or wheelchairs, and ongoing therapy, medical care, and/or surgical treatments may be necessary to prevent and manage complications throughout the individual's life.

Dr. Waring credits major hospitals like Children's Hospital of Wisconsin for offering the comprehensive, multidisciplinary care these patients need when they are young. Patients see a group of specialists in a single clinic on a routine basis, including experts in neurosurgery, orthopedics, plastic surgery and urology, in addition to the physical medicine and rehabilitation doctors and therapists the patients see on a regular basis.

The spina bifida clinic at Children's acts as a part of a medical home for children with spina bifida, he says, and is staffed by friendly, compassionate people who are accustomed to helping children with disabilities.

The Transition to Adult Care
How to transition young adults with pediatric-onset disabilities to the world of adult health care is an important topic that is being more widely recognized, says Dr. Waring. Many children's hospitals and pediatric health care providers are facing the challenge of what to do with child patients when they become adults: children's hospitals and pediatric specialists are often not equipped or trained to handle adult-size patients; there are not enough pediatric specialists to continue to care for children as they become adults; and medical insurance can limit or refuse coverage for an adult in a children's hospital.

This is a problem not only with spina bifida but also with many other pediatric medical problems and disabilities which patients now can survive into adulthood.

In southeastern Wisconsin, from birth to adolescence, children with spina bifida are able to receive their care through their pediatricians and the Spina Bifida Clinic at Children's Hospital.

To enable young patients to complete the transition to an adult-based spina bifida program, Dr. Waring is currently working on a pilot program wherein Froedtert & Medical College spinal cord staff will help transition the younger population into the programs and services for adults.

"This effort with spina bifida patients falls under what we call the neuroscience program," he explains. "We have all the expertise there, and with this population we're looking at a model of how we'll take care of their primary care needs. We have already created a precedent with adults with spinal cord injuries who use the Physical Medicine and Rehabilitation Clinic as their home base. We have clinic hours every day and also have appointments reserved for urgent problems so we can keep patients out of the emergency rooms and hospitals.

"We are also discussing opening specialized hospital beds close to the rehabilitation unit that will offer well-trained rehabilitation and medical/surgical nurses and will be jointly run by myself, my colleague Dr. Merle Orr, and a small group of internal medicine hospitalists."

Although complications of spina bifida can range from minor physical problems to severe physical and mental disabilities, Dr. Waring says many people with spina bifida can lead relatively normal lives. "Most of my patients are very healthy," he says. "They come to see me once or twice a year to get their medicines refilled or get a prescription for a new wheelchair. But they just don't need to see us that often."

With their training and the facilities available to them, Dr. Waring says he and his team are well-suited to care for these patients. "We're set up to take care of 90% of their problems," including:

• physical and mobility difficulties
• bowel and bladder complications
• fertility
• medication maintenance
• maintenance of the brain shunts that are inserted in childhood to relieve hydrocephalus, an excessive accumulation of cerebrospinal fluid in the brain
• learning disabilities (Dr. Waring says his patients come from a whole range of cognitive abilities, from those who need special education to others who have graduated from college.)

"Those generally are the care needs of this population," Dr. Waring says. Patients with any issues that cannot be addressed at the clinic are referred to the appropriate specialists. "The advantages we will have over a non-specialized primary care environment are that we will recognize unusual complications and we will know who to contact if needed."

"They're young adults and they're otherwise healthy, so many of them don't need specialized care. One exception is bladder management, which is a problem with almost every person with spinal bifida or spinal cord injuries. When they get sick they often need to see a specialized urologist or neurosurgeon. To address these needs, during their initial appointment with Dr. Waring or Dr. Orr, patients will also be scheduled to see R. Corey O'Connor, MD in the adult urology clinic.

Patients and families who are transitioning their medical care to the adult world have been invited to be part of a study headed by Dr. Kathy Sawin from the University of Wisconsin-Milwaukee, who intends to get feedback from the young adults and their families about how well the transition process worked and to study the long-term adult health care needs of this population.

Young adults who are currently participating in the Spina Bifida Program at Children's Hospital of Wisconsin should contact Karen Rauen, Clinical Nurse Specialist, at 414-266-2690 to arrange for a transition visit in preparation for their new experiences at Froedtert.

Those who have not participated in the Spina Bifida Program at Children's Hospital of Wisconsin and wish to schedule an appointment in the Physical Medicine and Rehabilitation Adult Spina Bifida Program should call 414-805-6655 (outside Milwaukee 1-800-272-3666) or 414-805-7342.

This article includes information from the US Centers for Disease Control and Prevention (CDC) and the National Institute of Neurological Disorders and Stroke.

For more information on this topic, see the HealthLink article Spina Bifida Complications Are Based on Severity of Defect.

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.