Going to College with Spina Bifida

May 05,2022 |
Girl in a wheelchair talking to her friend.

Graduating high school is a transformative time for everyone. It marks the transition into adulthood and what follows are exciting opportunities to learn, grow, and work towards accomplishing your goals. For some, this may be heading straight into a prosperous career or trade, for others, this means going off to college. Although exciting, going to college can be nerve wracking for everyone. Whether you’re able-bodied or currently living with a disability, there are certain things you need to understand when taking on this new independence. To help provide some insight, here is a little more information about going to college with spina bifida.


What is Spina Bifida?

Spina bifida is a birth defect that affects the spine. The onset occurs during fetal development, usually around the third and fourth weeks of pregnancy. This neural tube defect (NTD) can occur anywhere along the length of the spine and causes gaps in the backbone as it doesn’t properly fuse or close. These gaps can lead to increase vulnerability of spinal cord nerves, which increases the risk of problems. Each case of spina bifida is different and can range in severity from mild to severe. There are three different types of spina bifida that can affect individuals, which include spina bifida occulta, meningocele, and myelomeningocele.

  • Spina Bifida Occulta – this is a mild form of spina bifida where no protrusion of the spinal cord occurs. It’s fairly common and occurs in about 1 in 10 people, but rarely causes health problems or physical disabilities.


  • Meningocele – in this type of spina bifida, the spinal fluid that protect the spinal cord pushes through the gap in the spine and results in a protruding sac called a meningocele. This is the least common type of spina bifida and doesn’t usually cause severe problems as no neural tissue is exposed.


  • Myelomeningocele – when someone refers to spina bifida, they’re usually talking about myelomeningocele. This is the most well-known form, but also the most severe. Both the meninges and the spinal cord protrude through an opening in the back, which can cause nerve damage and further disabilities.


The cause of spina bifida is currently unknown but is likely due to a mixture of genetic and environmental factors. However, 95% of babies with spina bifida are born to parents with no family history. There are some factors that increase your risk of having a baby with spina bifida, so if you have any concerns always discuss them with your doctor. Taking 400 mcg of folic acid every day, ideally beginning one month before conception, managing medical conditions, and being proactive about your health throughout your pregnancy can reduce the risk of neural tube defects.

Treatment options vary based on individual circumstances, degree of severity, and type of spina bifida. There are options for both fetal surgery and infant surgery in certain instances, but spina bifida will require ongoing care. However, with the proper support, you can still grow up to be confident and independent.


Tips for Going to College with Spina Bifida

While spina bifida requires ongoing care to stay healthy and avoid complications, you can still enjoy your life and work towards your dreams. If you’re preparing to head off to college with spina bifida, consider some of the following tips to make your transition easier.

  1. Apply for Scholarships and Grants

    Going to college is an expensive investment that many families struggle to afford. That’s why student loan debt is so high in the U.S. However, there are other ways to pay for your tuition aside from entering the never-ending cycle of monthly loan payments. One of the best options for students with disabilities like spina bifida is applying for financial aid. There are several scholarships and grants available to help you pay for college and the additional financial needs of attending with a physical disability. Start by asking your high school counselor or aid for resources, look at your college’s Disability Resource Center website, and browse options on popular scholarship sites. Apply for as many scholarships and grants as you can to help you pay your way through college.


  2. Practice Independence

    College is synonymous with independence. It’s often the first time that you’ll be completely on your own, away from your parents or primary caregiver. This means that you need to ensure that you know how to properly care for yourself and maintain your health while you’re on your own. Try to do this before you leave for school to help prepare for the transition. When you start looking at prospective schools, take responsibility and control for your personal care routine if possible. Practice performing the tasks that you can manage on your own to grow your confidence and capability of doing so when you leave for college.

    While some people with spina bifida will always need the help of a caregiver for tasks, others can lead a fairly independent life. Some ways to practice your independence include learning all of the steps that go into caring for your bowel and bladder management routines and practicing clean intermittent self-catheterization. Mastering these two aspects of self-care will greatly enhance your independence, even if you need help in other areas of your life.


  3. Find a Local Healthcare Team

    When moving away from home, it’s important to find a local healthcare team that you’re comfortable with. Try to start looking at your options as early as possible so you have time to meet potential doctors and nurses and begin transferring your care and medical information. Rather than blindly looking online, try asking your current doctors about referrals in the city or town of your college. This can help increase your trust in new doctors and make the transition easier. Local healthcare teams should include all of the same types of doctors and specialists as you currently use to avoid gaps in medical care.


  4. Use Campus Resources

    Most college campuses are equipped with information and resources for individuals living with various types of disabilities. Reach out to your prospective schools to better understand how their campus’s Disability Resource Center (DRC) functions, where it’s located, and what services they offer. The DRC can help you find accommodations for your disability while providing you with everything you need to make the transition easier. Their goal is to help provide students with disabilities the same experience as able-bodied counterparts. This ranges from accommodation help, classroom access, classroom assistance, campus jobs, and additional scholarships to help you cover expenses.


  5. Maintain a Reliable Supply of Catheters

    College can be overwhelming for even the most able-bodied individual. When you have a disability that requires specific supplies and treatments, anxiety can greatly increase if you’re not prepared. Since feeling overwhelmed can reduce your confidence levels and self-esteem, it’s not an ideal way to start this new chapter in your life.

    To help you confidently settle into your routine, make sure that you go to college with a sufficient stock of catheters and other necessary medical supplies. You should have everything you need to cover the first few weeks of your transition. It’s also important to find a reliable medical supply company that will ship your urologic supplies to your college location quickly and discreetly. This will help you maintain privacy and give you the confidence you need when making new friends. Parents can help their children get used to the ordering process by involving them early on, before they leave for college. Byram Healthcare has a wide range of urologic supplies, including several types of catheters, that can be shipped anywhere in the U.S.


  6. Have Fun!

Finally, college is an exciting transition for young adults. For many people, it’s the first time they get to enjoy their independence and make decisions completely on their own. Do what you can to be prepared, find a support team, and put yourself out there. Join clubs, expand your hobbies, and attend social events to meet new friends. College is a time of self-discovery, so have fun and make memories that will last a lifetime.

Spina bifida affects over 1,600 babies each year in the United States. While it can cause limitations with independence, most individuals go on to live a happy, healthy life with families of their own. To help you make living with spina bifida more manageable, Byram Healthcare provides a range of urological supplies and educational resources. Browse our urology products today or call our Urology CareLine for clinical resources supplied by WOCN nurses at 1-877-902-9726.

We are a member of the National Association for Continence’s Trusted Partners Program, whose mission is to provide quality continence care through education, collaboration and advocacy. We are also a proud sponsor of the Spina Bifida Association of Northeastern NY, whose mission is to build a better and brighter future for all those impacted by Spina Bifida. We continue to build partnerships in the clinical community to ensure we focus on what’s best for the patient.