NewsMar 13, 2020

Coronavirus (COVID-19): What People with Spina Bifida Need to Know

Guidance and Recommendations Regarding COVID-19 for People with Spina Bifida

Timothy J. Brei, MD, FAAP
Medical Director, Spina Bifida Association

This is a challenging time as health officials in the United States seek to curb the spread of the novel coronavirus (COVID-19). We understand that many of you may have fears or worries about your own health or family members. You may also have fears and worries about the unknown.

This information includes the best available recommendations, based on what is known about the current COVID-19 virus, as well as information regarding viral illnesses in general.

Here are some important things that you should know:
  • COVID-19 is spread via aerosol, which means particles can be inhaled from the air when a person coughs or sneezes. It is also shed in other body fluids, such as urine and stool, as well as nasal secretions and saliva. Therefore, it can be spread through poor sanitation before and after catheterization or toileting procedures, by poor secretion control, or by touching kitchen or bathroom surfaces.
  •  To date, there have been no deaths reported worldwide in children under 10 years of age. This may suggest that infected children are less likely to get severe or life-threatening disease. However, parents and caregivers should ensure that they and their children follow the best recommendations for preventing the spread of COVID-19.
  • In general, individuals with Spina Bifida are NOT at increased risk of being infected by COVID-19 or increased risk of severe illness. However, people with Spina Bifida or a loved one may fall into a high-risk category. These would include:
    • Adults over the age of 60
    •  People with heart disease
    • People with chronic respiratory issues
    • People with diabetes
    •  People with medical conditions or taking medications which may make them immune-suppressed.
  • There is no medication to treat or prevent COVID-19 infection at present, though medications to
    treat symptoms of fever, cough or congestion may be recommended.
  • Remember that stigma will not help fight illness. The risk of COVID-19 is not connected with income level, race, ethnicity, or nationality.
Here are things you can do to help protect yourself from either contracting or spreading COVID-19:
  • Wash your hands with soap and water or alcohol-based sanitizer frequently. Soap and water are as effective as hand sanitizer if done properly. To do this, lather up your hands and scrub for at least 20 seconds. This is the length of time to sing the “ABC Song.”
  • Wash or sanitize after the following situations:
    • After coughing or sneezing, even if you have covered your cough.
    • Before and after catheterizations, bowel routines or any toileting procedures, even if
      you have used gloves.
    • Touching potentially contaminated surfaces.
  • Avoid touching your face, nose, or mouth unnecessarily. Wash your hands after touching your face.
  • Avoid tightly-crowded spaces with unknown individuals, if possible.
  • Avoid touching surfaces in public places (elevator buttons, door handles, etc.) as much as possible. Consider using a tissue to touch those things. Wash or sanitize after touching if at all possible.
  • Clean and disinfect counters and equipment at work.
  • Clean and disinfect your home to remove germs: practice routine cleaning of frequently touched surfaces (for example: tables, countertops, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones).

Check with your home medical supply companies and /or providers that sign for supplies, for any questions regarding the delivery of supplies.

For more specific information about your area of the country, look for information from your local city,
county and/or state health departments.

Additional updated information may be found at the Centers for Disease Control and Prevention (CDC) website.

Here is information about talking to children about COVID-19.

Our organization’s services will NOT be affected at this time. We will continue to answers calls, emails, and continue to be a resource for the Spina Bifida community. We will continue to monitor the situation closely and send out further communications as necessary.

Thank you for your understanding and patience as we all navigate this public health event. Please contact our National Resource Center with any questions.

Information and Q&A: Spina Bifida and COVID-19

This webinar will bring you expert advice on how people with Spina Bifida, their friends, and families can watch over their physical and mental health in today’s environment with COVID-19.

Date: Thursday, March 26
Time: 2 pm ET

Moderator: Sara Struwe, President & CEO, Spina Bifida Association


  • Timothy J. Brei, MD, Spina Bifida Association Medical Director and Professor of Pediatrics, Division of Developmental Medicine, Seattle Children’s Hospital
  • Cortney Wolfe Christensen, Ph.D., Clinical Psychologist, Cook Children’s Health Care System, Fort Worth, Texas

Click here to register.