Spina Bifida Clinic

If your child has spina bifida, you want the best possible care from experts who treat this condition. At Phoenix Children’s, our team of neurosurgeons, pediatric specialists and pediatricians are ready to help.

Our Spina Bifida Clinic coordinator is available to work with you and your family as you seek care from our clinic. They can assist with coordinating the care you need, helping your family find the right resources and much more.

What to Expect at Your First Visit

When you call for an appointment with us, your care and processes may look like this:

Your child may have imaging or labs done prior to your first appointment at the clinic, so your doctor can talk with you about the results. Imaging may include an X-ray, magnetic resonance imaging (MRI) of your child’s head and spine, and an ultrasound of your child’s bladder and kidneys. Labs may be drawn to evaluate kidney and bone health.
When you arrive for your visit, our team will greet you and bring you to a room where all your child’s providers will come to visit for streamlined care. You’ll have a chance to talk about concerns such as walking and mobility, bowel and bladder health, and anything else on your mind.
You’ll meet with a complex care pediatrician, neurosurgeon, urologist, orthopedic surgeon, pediatric surgeon/bowel management specialist, nephrologist, psychologist, nutritionist, wound care provider, and physical and occupational therapists. Orthotic vendors are typically present, as well as a social worker if needed.
When available, our child life specialists will entertain and comfort your child during any down time.
At the end of your visit with our team, you will have a chance to get something to eat. You may be able to meet some other parents of children with spina bifida, in addition to volunteers from the local support group.

Your first visit with us will give you the confidence you need to get your child the best possible care, now and in the future. You’ll have a plan for anything that needs to be done to optimize your child’s care, and we will share that plan with your primary pediatrician.

The best way you can prepare for your child’s first visit is to gather any records your child has from another spina bifida clinic or hospital (if applicable). We also need copies of any previous MRIs. To get these records, you’ll need to complete and send the Authorization for Release of Protected Health Information form to the facility that has your records.

The facility should be able to provide your records in one of these formats:

Electronically through a program called PowerShare
A disc sent directly to our clinic
A disc that you to bring to your clinic visit at Phoenix Children’s

Our clinic coordinator is here to help you get any records you need.

The first visit typically lasts four to five hours, from about 7:30 a.m. to 1:00 p.m.

We typically see infants at around 3 months of age and then again at 12 months of age. After your first visit, you should plan to visit the clinic once each year for a full checkup.

For all visits, please bring any equipment your child uses for movement, such as braces, wheelchair, crutches, walker and gait trainer. It’s important to bring the equipment even if you think it is broken or too small, so we can determine if your child needs new equipment.

If you have any medical records or imaging that you have not provided to the clinic, please bring them with you.

Your child will likely need to have imaging, labs or both before every annual visit. It is very important to complete any requested imaging or labs before your scheduled annual visit. If you’re not sure what imaging or labs you need, contact our clinic coordinator.

Imaging may include a renal ultrasound, abdominal X-ray, or MRI of the brain or spine. If your child needs an MRI, and especially if they require sedation, make sure you schedule the MRI 4–8 weeks before your annual visit.

If you need to cancel your visit, we ask that you give us as much notice as possible since we only have a limited number of openings for clinic visits. We appreciate you letting us know at least a week before your appointment (or at a minimum, 24 hours before your appointment).

One of the easiest ways to access your child’s records is to use the Patient Portal. View discharge instructions, find summaries of your visit, request copies of medical records and more.

If you have questions, first contact our clinic coordinator at 602-933-3517. You can also use the Patient Portal to access your records or email your providers.

Meet the Reeve Family

Their son, Patrick, was born with spina bifida. Luckily, they met Dr. Kathy van Leeuwen, director of the Phoenix Children’s Fetal Care Center. Together, they helped to develop a multidisciplinary clinic so all families could experience the coordinated care they received at Phoenix Children’s.