Updated 4/10/2020 – please visit the CDC for the latest information: https://www.cdc.gov/coronavirus/2019-ncov/
- Why is COVID-19 referred to as a disease? Isn’t it a disease a chronic condition?
Diseases can be acute and can also be chronic. A lot of people have ongoing, chronic conditions. A virus, on the other hand, has a start and finish. However, both are considered diseases.
Risks to people with Spina Bifida
- Are people with Spina Bifida more vulnerable to COVID-19 given their underlying conditions?
Spina Bifida alone is not automatically a risk factor to contract COVID-19. However, people with Spina Bifida may be at increased risk if they have been exposed to someone with COVID-19; have a high-risk condition as identified by the CDC such as diabetes, heart or lung disease; or if they are over 60 years of age.
Ensuring good hygiene will significantly reduce the risk of contracting COVID-19. People should wash their hands before and after their toileting and bowel routine, avoid touching their face, and practice social distancing as much as possible.
Good hygiene is particularly critical when a person with Spina Bifida has a home health aide or other caregiver because they may have been exposed to the virus.
- Is it true that you do not need to exhibit all of the symptoms to have COVID-19?
The symptoms of the novel coronavirus infection can and do vary. An individual does not need to have all of the symptoms in order to have an active infection. We know that some people may be asymptomatic even when they have an active infection. That is why caution and appropriate hygiene is crucial to stop the spread of the virus and help prevent infection.
Care Provision and Triage
For health care providers
- How may health care providers check in on their patients with Spina Bifida and their families in order to help them stay safe and healthy through this time?
Most hospitals are limiting face to face visits unless it’s considered urgent or an emergency. Many places are using telemedicine options, including telephone check-ins or video visits. This does not take the place of face to face visits, but it allows people with Spina Bifida and their families to stay in touch with their providers. We know that many hospitals are deferring routine studies in patients without acute symptoms, but those decisions are being made by each individual hospital.
For caregivers and adults
- We’ve read and heard that hospitals are prioritizing COVID-19 cases. What should individuals with Spina Bifida or their families do if medical personnel are unable to provide immediate care?
Children’s hospitals are certainly admitting children who have COVID-19, but to date, they have not experienced the same surge of patients that is occurring among hospitals that are seeing adults. In general, health care providers have discussed their triage procedures with their team and reached a consensus based on their health department’s recommendations.
- What if you rely on home health aides that also work with other clients?
If individuals have health aides coming in to their homes, those aides should self-screen for symptoms of COVID-19. In addition, they should wear a mask and wash their hands with soap and water for 20 seconds before and after assisting their clients with Spina Bifida.
- If our adult child has to be hospitalized, could he have a family member stay with him? He cannot make medical decisions on his own.
Caregivers of adults with Spina Bifida should have legal documentation of power of attorney or legal guardianship that indicates a need for the adult with Spina Bifida to have assistance for medical decision-making, and they should provide that documentation to the hospital. A family member staying with the adult would need to be discussed individually with hospital providers as each hospital is able to set its own rules and restrictions, and special situations such as yours may need to be made on an individual basis.
Cleaning, disinfectants, hand washing, and hand sanitizers
- Should I wash my hands with soap and water or use hand sanitizer?
Wash your hands often with soap and water for at least 20 seconds, especially after interacting with a sick person. If soap and water are not readily available, use a hand sanitizer that contains at least 60% alcohol. Cover all surfaces of your hands and rub them together until they feel dry. For more information, read the CDC’s information and guidance regarding when to use hand sanitizer, including this link with a fact sheet about handwashing and hand sanitizer use.
- Wet Ones® wipes are said to be antibacterial, but do they work for COVID-19? Many of us use those for clean up, but what should we use instead, since it’s impossible to find our usual wipes in the store and we can’t use soap and water when we are away from home?
You may want to try keeping a travel-size bar of soap in a plastic bag or plastic travel soap container, as well as paper towel, in your bladder/bowel supply bag. That way you will always be able to use soap and water to keep yourself clean.
Also ask yourself: Do I have to be out and about? Is it possible to work remotely? Additionally, try to time your outings with your bowel/bladder routine so that you can avoid having to void and clean yourself in an environment outside of your home.
- When we receive packages, supplies, groceries, and other materials through the mail or by delivery, should they be handled in a special way? Does the CDC have a list of personal hygiene and household cleaning products that they recommend?
Whether you go shopping for groceries or have them delivered, follow the CDC’s current guidance for cleaning and disinfecting items in your house. Visit the CDC’s website for general recommendations on cleaning and disinfecting. You should also visit the EPA’s website to view their list of suggested disinfectants. Use the search function if you are looking for a particular item, such as “wipes.”
Risks from Related Conditions or Procedures
Breathing difficulties, scoliosis and restrictive lung disease
Are people with Spina Bifida and sleep apnea (both central and obstructive); ones who have never had a productive cough; people with shorter torsos (with a smaller chest and lungs); and those with reduced lung function at more risk from COVID-19?
People with Spina Bifida who have thoracic-level lesions or who have severe scoliosis may be at increased risk of having more severe complications from COVID-19 because it causes significant respiratory issues.
People with a thoracic-level lesion are at increased risk in general because they don’t have full lung expansion or the ability to clear their airways of secretions. People with thoracic-level defects are usually also more likely to have scoliosis, and have restrictive lung disease. Restrictive lung disease happens when the lungs are not able to fully expand.
Even if someone has not been diagnosed with restrictive lung disease related to a thoracic-level lesion, or does not have significant scoliosis, it is still wise to take the extra precautions and presume that they are at a high-risk group. A health care provider can address questions in case a person has mild scoliosis.
Chronic Lung Diagnosis and Other Respiratory Illnesses
Do people with Spina Bifida and a chronic lung diagnosis have to make a greater effort to wipe down items brought into the home?
People with chronic respiratory issues (the CDC includes moderate to severe asthma in this category) are at greater risk of experiencing severe symptoms of COVID-19. We suggest following the CDC’s guidance on cleaning household items.
Does having Spina Bifida and epilepsy put a person at a higher risk of getting COVID-19?
The Epilepsy Foundation states that having epilepsy alone does not put people at higher risk of getting COVID-19. For more information, visit the Epilepsy Foundation.
I have Spina Bifida and am in my late 40’s. I have borderline hypertension and no other underlining condition. Besides the usual precautions from the CDC, are there any other precautions I should take?
The best option is to follow the CDC’s hygiene recommendations. People with hypertension are not at increased risk of catching COVID-19, but they may be at increased risk of facing more severe symptoms of the disease if the hypertension has caused their heart to work harder than normal.
Kidney and liver health
Does reduced kidney function, chronic kidney disease, or chronic liver disease affect the immune system’s ability to fight the virus?
Both chronic kidney disease and chronic liver disease may impair immune function. People who have these conditions may be at increased risk of getting the disease due to a weakened immune system, and face an increased risk of the disease being more severe. They should speak with a health care provider who knows their individual situation and circumstances. Everyone should follow all recommendations from the CDC on how to protect themselves.
I’ve seen people wearing latex gloves in grocery stores, banks or gas stations. This puts us with latex allergy at severe risk of developing an allergic reaction, and we are terrified of going to a store to buy food that has been handled by someone wearing latex gloves. What can we do?
Please click here for an important update from the Asthma and Allergy Network about how the Food and Drug Administration’s revised glove guidelines impact people with latex allergy.
While many people are using latex gloves as a protective measure, we have also seen people wearing vinyl or nitrile gloves, which do not pose a risk to people with latex allergy. One option is to contact the establishment in advance of your visit to ask if they are using latex or non-latex gloves. Parents who have a child with latex sensitivity or allergy should not take them to places where they may be at risk of exposure. If an adult with Spina Bifida has latex sensitivity or allergy, they could ask friend or family member to shop for them, and ask them to wipe items down before they are brought into the home. Additionally, people with allergy or sensitivity to latex can protect themselves by wearing a mask and non-latex gloves when they enter establishments that could have been exposed to latex. For more information, visit SBA’s information about latex allergy website and the Asthma and Allergy Foundation.
Does having lymphedema heighten my risk of getting COVID-19?
We don’t know with certainty. The lymphatic system plays a significant role in immune function. Lymphedema is frequently accompanied by obesity, poor circulation, or heart disease. As such, SBA would consider a person with lymphedema to be at increased risk of contracting COVID-19, and suggest that they speak with their health care provider for more specific information. We also cannot overemphasize the importance of hygiene: follow the CDC recommendations for protecting yourself.
Does having a Mitrofinoff or ACE/MACE procedure and cathing several times a day lower your immune system and expose you to a greater risk of contracting COVID-19?
People who have a Mitrofanoff procedure, Antegrade Colonic Enema surgery (ACE) or Malone Antegrade Colonic Enema (MACE) procedure, or who catheterize, could contract the infection by spread from secretions. They should maintain good hand hygiene before and after doing any kind of procedure.
The virus spreads by secretions we make, so you would not necessarily be at risk if you don’t have COVID-19. But, if you require assistance to perform these procedures, there could be a greater likelihood of spread as a result of being in close contact with the person assisting you, and possible exposure to aerosolized particles spread though cough. However, washing hands before and after procedures, particularly if people assist you with a MACE or catheterization, will protect you.
Methicillin-resistant Staphylococcus aureus (MRSA)
If you have SB and MRSA, are you at increased risk?
Not necessarily. A number of people are colonized with MRSA, meaning that MRSA is on their skin and body. However, they are not getting sick from it. We do not know that having MRSA colonized as opposed to being actively ill with MRSA would be any more of a risk factor in contracting COVID-19.
Shunts and cerebrospinal fluid (CSF)
- Does COVID-19 effect people with shunts?
Having a shunt does not place you at increased risk of getting COVID-19. We don’t know if having a ventriculo-atrial (VA) shunt or ventriculo-pleural (VPL) shunt versus a ventriculo-peritoneal (VP) shunt would be an issue if you got a COVID infection. Contact your health care providers if you suspect that you have COVID-19 so that they may monitor you closely, and review the guidance from the Hydrocephalus Association for patients with hydrocephalus.
- I understand that shunts in and of themselves are not a risk factor for people with Spina Bifida. But what if a ventriculo-pleural (VP) shunt rests between the lining on the surface of the lung? Can that lead to more extreme complications should that person get COVID-19?
At present, people with a ventriculo-pleural (VP) shunt are not considered at increased risk of catching the disease. However, a person with a ventriculo-pleural shunt that contracts COVID-19 could be at risk of experiencing a greater severity of symptoms because of where the tubes are located — the heart.
- Is there any evidence that COVID-19 infects the CSF?
At present, unless a person has another medical reason, people with Spina Bifida and shunts are not considered high risk.
I lost my spleen as a result of complications from Spina Bifida. Am I at increased risk?
We do not have information about that. Please talk to your health care providers directly.
Are people with a suprapubic catheter at a higher risk from having that opening in our bodies?
Having the suprapubic catheter in place does not automatically place you at higher risk. But it is imperative that you follow good hygiene techniques and the CDC’s recommendations for staying at home, social distancing, and cleaning your home.
If you contract the novel coronavirus and recover, can you get it again?
The full answer to this is unknown. However, doctors and researchers believe that if you have had COVID-19 you are unlikely to get it again. It is believed that you will develop immunity to this current virus. That hope is the basis for work on developing a vaccine.
Is everyone going to be covered by insurance?
SBA’s National Resource Center suggests contacting your private, state or federal insurance provider with any questions about coverage. You may also want to view the SB-You webinar, How to Understand Your Insurance Coverage and Write an Appeal Letter.
Living with someone who is infected
If a caregiver gets symptoms and can’t fully isolate, what should they do — besides follow usual hygiene procedures — to avoid transmitting COVID-19 to children with Spina Bifida while assisting them with tasks that require direct contact such as catheterizing, administering enemas, and lifting them?
If someone in the household is sick, that person should isolate themselves as much as possible and stay in a single room. If possible, the person should use a separate bathroom and wear a mask when other family members or caregivers are nearby. Every day, clean all surfaces that are touched frequently by family members. Caregivers should wash their hands appropriately after providing ANY care to a person with COVID-19. Everyone in the home should avoid touching their face. The CDC has more detailed information available at https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/care-for-someone.html
Masks and Gloves
Should I wear a mask and gloves?
The CDC is now recommending that people who are out in public both practice social distancing as well as wear a cloth face covering. It is believed that the covering will not keep people from getting COVID-19, but may help them avoid touching their face and remind them to wash their hands often. In addition, it is hoped that wearing a face covering will decrease the risk of COVID-19 being spread by aerosol by people who are asymptomatic or mildly symptomatic.
Gloves themselves won’t prevent people from getting COVID-19 unless they strictly follow all the general hygiene recommendations.
Mental health and well-being
Please review the resources shared in the Spina Bifida and COVID-19: How is COVID-19 Affecting Your Mental Health? and the SB-YOU webinar, Take Care of Your Mental Health.
Are newborn babies at a higher risk due to their decreased immune system?
At present, we simply do not know. There is little information about COVID-19 in babies. The CDC will learn and gather more information as the pandemic continues. Follow the CDC’s recommendations on how to protect yourself and your baby from getting COVID-19.
Physical Activity and Exercise
What options to I have to stay active during this time when we are mostly stuck at home?
View SBA’s SB-You webinar, Get Fit and Stay Healthy! It has a lot of great ideas for staying active if you cannot visit the gym or leave your house.
If you are on a prophylactic due to catheterization, are you at greater risk?
SBA does not believe that being on a prophylactic antibiotic places you at increased risk.
I am adult with Spina Bifida, and I have a few lung issues. I was invited to a gathering at a friend’s house. I have not been out unless necessary. Is it okay for me to go?
Please follow the social distancing guidelines recommended for your area. Err on the side of safety. The recommendation from the CDC would be to not attend for now. Consider organizing or attending a virtual gathering instead.
Supplies and Substitutions
- How can we feel confident that we will be able to receive catheters or other medical supplies?
SBA has been in touch with various manufacturers of catheters and other incontinence supplies; they assure us there is no shortage. Please contact your supplier directly with questions, and let us know if you experience any challenges with availability.
- I’ve heard that glycerin (for irrigation) is scarce because people are using it to make homemade hand sanitizer. What do you suggest?
If you are having trouble finding glycerin for your bowel irrigation program, please contact the health care provider who helps you with your bowel management. They can help you find a substitution.
- What procedures are hospitals considering “elective” versus “emergency?”
Any surgery during the time of COVID-19 could pose an increased risk as a result of accidental exposure to a health care professional who is pre-symptomatic or asymptomatic with active COVID-19. There is no single definition of what different hospitals are considering elective versus urgent surgeries. Please contact your health care provider to discuss this further
Urostomy and Neuropathy
Does having neuropathy and a urostomy put you at a higher risk of getting COVID-19?
Having a urostomy or neuropathy does not put a person at high risk. Appropriate hand hygiene and other precautions are key in decreasing the risk of getting COVID-19.
Urinary Tract Infections
Do frequent UTIs increase risk of getting COVID-19?
Frequent UTIs are not considered an increased risk factor for COVID-19. Wash your hands before and after each toileting and bowel procedure.
- Does being a full-time manual wheelchair user put you in a high-risk group?
This is a challenge, and it depends much on your level of mobility. People who are able to do some walking may have a decreased risk of lung disease compared to those who are full-time wheelchair users. Regardless of your level of mobility, practice six feet of social distancing: six feet from side to side and six feet in front and back of you. This will reduce the potential spread from coughs, sneezes, and secretions.
- How long will the virus live on a wheelchair? Could a wheelchair bring it into the home?
We believe that the risk of spread from this kind of contact is less common, but it certainly may occur. We don’t know for sure how long the virus will survive on different surfaces, including wheelchairs. It may vary depending on the amount of virus a person is exposed to or how much exists in the environment. It likely also depends on the type of material a surface is made from. In laboratories, the virus has been detected for up to 72 hours.
Practice frequent hand washing and use hand sanitizer when soap and water are not available. At the end of every day, wipe down the wheelchair with a household cleaner to help reduce the chances that the virus will live on your chair. If you use other assistive equipment, clean and disinfect those as well. Follow the CDC’s suggestions for routine cleaning of household items with your assistive equipment and devices.
Do you have a question that was not covered here?
Please contact the National Resource Center: firstname.lastname@example.org or 202-618-4753
Answers prepared by:
- Tim Brei, MD, Spina Bifida Association Medical Director, Professor of Pediatrics, Division of Developmental Medicine, Seattle Children’s Hospital, Seattle, WA
- Cortney Wolfe-Christensen, PhD, Clinical Psychologist, Cook Children’s, Ft. Worth, TX