Lifetime Care Model
At Children’s of Alabama, we believe in multi-disciplined, comprehensive care for individuals with Spina Bifida throughout their life span. This process begins with family counseling at the time of a prenatal diagnosis of Spina Bifida and has continued through the teen and early adult years. Maximizing the benefits of a multidisciplinary care clinic, has translated into an improved quality of life and an extended lifespan. Recognizing that the needs of an individual with Spina Bifida don’t end after the teen years, it became apparent that transitioning care to an adult environment was in the individual’s best interest. Because of the sincere passion of the highly skilled team of physicians working in Children’s of Alabama’s Comprehensive Spina Bifida Clinic, a cooperative program was developed with UAB and Spain Rehabilitation to create an adult clinic in order to provide a continuation of care to adults with Spina Bifida throughout Alabama.
The Spina Bifida prenatal clinic meets on the 3rd Friday of each month, in the UAB Maternal Fetal Clinic located in the new state-of-the-art
Women and Infants Center. During these meetings families diagnosed prenatally with a fetus affected by a neural tube defect have the opportunity to meet with a comprehensive team to discuss care. The team is comprised of high risk OB/GYN, neurosurgery, rehabilitation medicine physicians, Spina Bifida program coordinator, genetic counselors, and nurse clinicians. The meetings are held in a “round table” type discussion and are tailored specifically to the needs of the families. During these meetings the families are given information on how to best care for an individual with Spina Bifida, what they can expect in regards to their child’s abilities, and what the first few months may present in terms of necessary surgeries and treatments. They are also provided with education materials and many contacts within the state to ease the process. The program coordinator forms a relationship immediately and begins working on things like housing after delivery and community resources to support them.
After delivery, infants are brought to the NICU at Children’s of Alabama and monitoring begins. The typical length of stay after delivery for the infant is 2-4 weeks. Within 48-72 hours, the initial surgery to close the infants defect is performed by one of the neurosurgeons. During this time, head circumference and CTs are monitored to determine the need for a shunt based on the hydrocephalus. A bladder protocol is initiated which includes catheterization to measure urine output and an ultrasound of the kidneys and bladder is obtained to establish the status of the urinary tract. Other imaging studies to assess the spine, hips, and feet are undertaken. Prior to discharge, in addition to the neonatologist and neurosurgeon, a consult is made to orthopedics, urology, and physical therapy. New patient teaching is given by the Spina Bifida coordinator which includes, “Health Guide for Parents of Children with Spina Bifida” and the “New Parent Journal.” The family also has shunt teaching, car seat instructions, teaching with physical therapy and referral to Early Intervention before discharge. Finally, they are provided follow up appointments which typically include a “wound check” appointment for two weeks after discharge, a multidisciplinary Spina Bifida Clinic appointment within three months of discharge and urodynamic testing in three months.
The pediatric Spina Bifida clinic meets on the 2nd and 4th Wednesday of each month in clinic 3 at the Children’s of Alabama Specialty Care Clinics. This clinic is comprised of Physical Medicine and Rehabilitation, neurosurgery, urology, orthopedics, nursing, care management/care coordinator, social work, physical therapy, orthotist, nurtrition, and research support staff. Children are typically seen in this clinic every 6 months for the first 5 years and annually after the age of 5. Appropriate tests are determined prior to clinic, upon arrival to the clinic patients have the scheduled tests performed in the morning so that the results are available during the afternoon clinic.
The basic model for surveillance testing is as follows:
- Renal Ultrasound- every 6 months through the age of 2 and then annually
- Urodynamics- Annually for the first 3 years, after 3 only if needed based on potential surgeries, tethered cord symptoms, or in determine course to achieve bladder continence.
- KUB- Annually for individuals who catheterize
- Head CTs- Every other year
- MRIs- As needed based on symptoms of tethered cord, chiari and/or syrinx.
- AP and Lateral Scoliosis xray- every 6 months for the first 5 years, annually after 5
- AP pelvis- annually for the first 5 years, as needed after 5
In addition to meeting with providers from each of the disciplines listed above, the program coordinator meets with the family to determine school needs and informs them of community and outreach opportunities. One of the true strengths of the clinic is the “behind the scenes” work that is taking place. Physicians that spread across many disciplines are meeting together and discussing their individual findings to determine how their findings fit with others. This collaboration allows the patient to not only benefit from the convenience of seeing their doctors in one place but also allows the communication necessary to reach best treatment plans in a complex population. It is our goal in this clinic to create an atmosphere where patients and their families can gain useful information and teaching that will be carried over into their daily lives. We want to utilize their time in clinic to provide the maximum amount of resources and education possible.
Care Coordinator will initiate transition by scheduling the patient for a visit at the UAB Adult Spina Bifida Clinic. The UAB Adult Spina Bifida Clinic meets on the third Wednesday of each month at Spain Rehabilitation in UAB. To optimize the smoothness of transition, the initial appointment will be made as the 21st birthday approaches. The following list will outline how transition will be handled for each discipline.
General Care/Physical Medicine and Rehabilitation: Dr. Amie Jackson spearheads all general care issues and all issues related to Physical Medicine at the UAB Adult Spina Bifida Clinic. She will also address OB/GYN issues with female patients. Largely as a result of Dr. Jackson’s comprehensive, holistic approach transitioning patients need not fear that their complex medical needs will be overlooked during and after transition.
Neurosurgery Transition: Dr. Blount attends the Adult Spina Bifida Clinic at UAB once per month and functions to facilitate transition of neurosurgical care. His role in the clinic is to establish an experienced neurosurgical presence in the adult clinic for regular scheduled routine cares. After seeing Dr. Blount each transitioning youngster will also be scheduled to see one of the adult neurosurgeons for a routine visit at the
Kirklin Clinic. The purpose of this is to establish care (while well) within the system in event of an emergency. Regular routine care such as surveillance, clinical and radiographic monitoring will be undertaken by Dr. Blount while the adult team will serve as backup in the event of an operative need. Dr. Blount will communicate with his adult partners about the patient’s that are being transitioned and serve as a contact resource for any non-emergent, non-acute neurosurgical problem encountered in our adult patients. All operative needs will be met by the adult neurosurgeons. Transition is NOT considered complete until the transitioning patient has seen the adult neurosurgeon at the Kirklin Clinic. As such, acute neurosurgical needs will be met at Children’s Hospital until this important step is complete. It is essential that this be completed by the 21st birthday.