Spina bifida can be a complex condition to manage – but it doesn’t have to hold your child back. Our team at the Spina Bifida Center is here to provide comprehensive, integrated care for your child and family. We work closely with kids and families to recommend treatments, provide care and suggest resources and support that help your child thrive.

At the Spina Bifida Center, your child and you will meet with many different specialists and providers all in one day. In fact, you won’t even need to leave the exam room. We come to you. And while it may seem like a long list of check-ups and check-ins, we’re able to accomplish a lot in one day – without the need for you to make multiple trips to the hospital or schedule several different appointments. Best of all, your child’s care team communicates directly with one another (and you) to share any insights, recommendations or ideas about your child’s treatment plan.

We understand that managing your child’s care can be overwhelming. We’re here to help. You’ll have a designated spina bifida nurse coordinator to help schedule appointments, share what to expect, connect you with necessary resources and answer any questions you might have. Learn more about what to expect at the first appointment with our care team.

Making an Appointment at the Spina Bifida Center

Our patients find us in several different ways – by a referral from their pediatrician or a specialty physician. Parents can also contact us directly to schedule an appointment for their child. (Families of existing patients can contact their spina bifida nurse coordinators directly to schedule an appointment.)

When making your child’s first appointment, our team will ask you several questions about your child’s medical history and information. They will also ask for medical records from your or your child’s current providers. Once our team receives the necessary medical records, we will call you back to schedule your appointment.

You’ll receive a call from a spina bifida nurse coordinator or medical assistant before your appointment. We’ll go over what to expect and collect information about your child’s symptoms, healthy history and previous treatments. During the call, we’ll share if you need to take any steps to prepare for the appointment, such as specific clothes to wear or if your child needs to fast. We may also assist you with scheduling several tests that may be needed prior to your appointment, such as a kidney ultrasound. Sometimes these can be done the morning of your visit to the Spina Bifida Center.

We’ll also answer any questions you may have about the visit, including which providers you’ll be seeing.

On the Day of Your Visit to the Spina Bifida Center

We want your first appointment (and all follow-up appointments) to be as easy and stress-free as possible. Our exam rooms are wheelchair accessible, making it easy to get in and out. We also have games, activities and snacks available to help pass the time during your visit.

Before Your Appointment

Be sure to bring your insurance card and any favorite snacks or drinks your child (or family) will enjoy. Remember to complete any scheduled tests prior to your appointment. We ask that families arrive 15 minutes before the appointment time. Please keep in mind you will need to allow about 15 to 20 minutes to park and walk to the center location. If you are running late, please call the center.

At Your Appointment

During your child’s first appointment, several members of your child’s healthcare team will complete a comprehensive review of their medical and psychosocial history and perform a physical exam. Depending on your child’s care plan, you may meet with the following providers:

  • Developmental pediatricians
  • Physical medicine and rehabilitation pediatricians
  • Pediatric urologist
  • Developmental nurse practitioner
  • Urology nurse practitioner
  • Pediatric orthopedist
  • Pediatric neurosurgeon
  • Registered dietitian
  • Social worker
  • Nurse coordinator
  • Clinical care researcher

All these providers will meet with you in your child’s exam room, so you don’t have to go all over the hospital to find the specialists you need to see. Some providers may even meet with your child virtually, through one of our department’s iPads. You may also be asked to participate in research studies or clinical trials. Participation is voluntary.

This initial appointment, as well as future appointments, typically takes about three to four hours.

After Your Visit to the Spina Bifida Center

You will receive an After Visit Summary before you leave, which includes important information about upcoming appointments or recommended tests. We’ll also discuss your child’s schedule for follow-up care.

Your spina bifida nurse coordinator is here to answer questions you have about your child’s care plan or health – even between appointments. You’ll also leave our center with contact information for all the specialists on your child’s care team.