Spina Bifida in Adults: Getting the Resources You Need

Are you or a loved one an adult with spina bifida? Why is it so hard to get the help you need? Our experts explain, and discuss strategies for ongoing care.

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It wasn’t so long ago that the birth defect spina bifida was considered primarily a pediatric disease. That’s because most people with the disease did not survive past adolescence. Today, in one of modern medicine’s major successes, more than 75 percent of people with spina bifida now live to adulthood. There are several reasons for this, but most hinge on the phenomenon of coordinated medical care for children with spina bifida.

Mother and adult daughter with spina bifidaAdults with spina bifida have "aged out" of the coordinated care system.

With so many people with spina bifida living so much longer, there comes a new problem—and let’s be clear, it is far better than the alternative of early mortality—that of adults with spina bifida aging out of the coordinated care system and being unable to obtain the resources they need.

Our experts are here to help. If you are or a loved one is an adult with spina bifida, here’s how to get help.

Spina Bifida Complications

With spina bifida, which literally means “split spine,” bones fail to close completely around the spinal cord early in the mother’s pregnancy.

This gap in the spine leaves critical nerves vulnerable to damage and even, in the most severe cases, exposed to the outside world. A wide range of complications can result, including:

  • Paralysis
  • Hydrocephalus (fluid in the brain)
  • Bowel and bladder issues
  • Orthopedic issues
  • Scoliosis

These complications are why it’s so important to get continuing medical care throughout your life. But once you hit your late teens and early 20s, that gets harder than ever.

The Move to Specialized Care in Spina Bifida

Physicians say there are a number of explanations for the longer lifespan of people with spina bifida, including improvements in:

  • Antibiotics: Better infection control has led the way for a new range of implantable devices and better wound care.
  • Shunts: Drain excess fluid from the brain before it causes brain damage
  • Urinary catheterization: Helps prevent urinary tract infections that previously often led to kidney failure and sepsis.
  • Scoliosis surgery: Severe scoliosis is common in spina bifida and may lead to severe respiratory challenges. Tools and techniques have improved.
  • Family education: Better awareness by caregivers leads to earlier recognition of problems like blocked shunts that can quickly become life-threatening.

But all these reasons hinge in part on coordinated care for kids. In coordinated care, an entire multidisciplinary team of physicians and therapists works together to manage each patient’s care. The entire team helps children with spina bifida and their families navigate the healthcare system. The medical team acts as a safety net as children grow and new challenges arise.

Adults Need Specialized Care, Too

In early adulthood, however, patients “graduate” from pediatric care to adult care. For most patients, the medical safety net vanishes abruptly and they are expected to manage their complex condition by themselves. That means knowing what kind of doctor to see for various situations and when.

“These patients have received so much support and guidance all their lives that it can be overwhelming to suddenly have to navigate the system on their own,” says Lindsay Andras, MD, a pediatric orthopedic surgeon at Children’s Hospital Los Angeles. “But about half of people living with spina bifida now are adults, so this is a problem we need to solve.”

According to the website of the Spina Bifida Association, a small number of adult spina bifida clinics are scattered throughout the country. One of them is the Gillette Adult Services Clinic at Gillette Children’s Specialty Healthcare in St. Paul, Minnesota. “We serve teens and adults who have conditions that began during childhood and require lifelong specialty care,” says Linda E. Krach, MD, a rehabilitation medicine physician there. “In my practice I’m able to see patients as adults that I saw as children, but that’s unusual.”

Both Dr. Andras and Dr. Krach believe that more institutions will add adult spina bifida clinics given the increased demand. “Now that there’s a need for more specialty adult care, we will over time see more physicians with the interest and training to provide that care,” Dr. Andras says.

Medical Needs in Adult Spina Bifida

Spina bifida can cause a wide range of mild to severe complications in children and adults. Although new complications can develop over time, adult spina bifida patients will probably need the same specialists they did as a child, Dr. Krach says, with the addition of an adult primary care physician: “People with spina bifida can get all the same issues that neurotypical people do, including hypertension and cardiac disease.”

And some common conditions occur more frequently among adults with spina bifida, including overweight and obesity, prediabetes and metabolic syndrome. “This is because people with spina bifida often have limited mobility, which decreases their ability to burn calories,” Dr. Krach explains.

Making the Transition to Spina Bifida Adult Care

After a lifetime spent forging close ties to a pediatric-focused medical team, it’s no surprise that many young adults with spina bifida and their parents find the transition to adult care to be challenging. Dr. Andras and Dr. Krach offer some tips for helping smooth the move to adult care in spina bifida.

Know your hospital’s policies on when a patient must transfer to adult care. Some institutions specify that pediatric care continues up to age 18, while others allow patients to continue to age 21 or 22. Some programs will continue to see young adults through a transition period that extends through the mid-20s if necessary.

Gather important medical records as you go. Plan ahead by automatically requesting copies of important medical records at the time. “It’s especially important to get and keep operative reports from any procedure you have, even from a young age,” says Dr. Andras. “For example, there are different types of shunts, and knowing what implants are in your back will help everyone.”

Keep a summary of your medical history. Knowing your medical details is important, but so is being able to give a new physician the big picture of your health, too. Putting together a brief overview in the Notes function of your cell phone means you’ll always have your medical summary when you need it. “You want to be able to tell a doctor information like what bladder surgeries you’ve had and when was your last shunt revision,” Dr. Krach says.

Plan for the transition to adult care. Parents often need help with the transition, Dr. Krach notes: “Parents often want to protect their adolescent and can have a hard time stepping back,” she says. “But teens with spina bifida need to learn self-mastery and autonomy, too.” Starting at about age 14 or 15, she suggests having the teen make their own appointments and request medication refills, then taking on progressively more responsibility as they master the easier tasks.

Find a strong primary care physician to head up your care. Just as a pediatrician anchored your medical team as a child, you’ll want an adult primary care physician who gets to know you well. This can be either an internist or a family physician. “Identify someone to serve as an ambassador to help you get the care you need,” says Dr. Andras. “Look for a really solid primary care physician who takes an active interest in disability issues and with whom you have good rapport.”

Get established with adult providers before you have a crisis. By definition, crises are unpredictable, but it’s a safe bet that anyone reaching adulthood with spina bifida will have had more than their share of challenges to overcome. It can hard to build trust with a medical team on the fly. “People who have a condition with a spectrum like spina bifida are more likely to receive optimal care when their doctor knows what’s normal for that person,” Dr. Andras says. “You don’t want to be a young adult with no medical team and a severe headache that sends you to the ER with no primary doctor who knows your background to call.”

Plan for mental and emotional support, too. Look for spina bifida resources from reputable sources like the Spina Bifida Association. Online or local spina bifida support groups can be helpful, too.

Learn how to voice your needs. It’s important for all young adults to learn to advocate for themselves, especially those who have spina bifida. “Don’t be reticent about calling your doctor when you have concerns and ask what you should do,” says Dr. Krach. “Both parents and teens should recognize that self-advocacy is a process and competence won’t happen immediately.”

But once you gain those self-advocacy skills, you’ll be well on your way to assembling a trusted medical team to help you navigate the challenges of adult life with spina bifida.

Updated on: 04/14/21
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