Practicalities & Spina Bifida Service Operations
- We, the Spina Bifida Team, are still here for all children and young people attending our service, and their families. Please contact us, or present to hospital, as you normally would with any healthcare concerns relating to spina bifida. While COVID-19 takes all the headlines, we understand that the everyday aspects of living with spina bifida continue.
Do not hesitate to get in touch through the usual channels if you are concerned about a potential urinary tract infection, VP shunt problem, pressure area, fracture, or anything else.
There is concern across Ireland that because of COVID-19, people are not seeking medical attention as quickly as they should. This may mean that young people become more unwell before they receive care. Seek help if you are concerned.
- The most important thing for families of young people with spina bifida is to follow the standard advice of the HSE and Public Health on social distancing and hygiene to help protect each other from coronavirus (available here).
- Stay at home where possible
- Avoid unnecessary trips and social contact
- Maintain social distancing
- Practice safe coughing/ sneezing
- Wash your hands
- Avoid touching your face
- Clinics, appointments and procedures
The Spina Bifida Clinic is included in the general suspension of outpatient activity in CHI. The May clinic has been cancelled. We do not yet know when routine clinics will open again.
As we have been doing, we will continue to contact families individually to inform them of changes to their appointments.
Many planned procedures, surgeries and scans have been postponed. Families affected by this will be contacted by the relevant departments to reschedule when things begin to return to normal.
Emergency surgery continues as normal, as does access to emergency medical care.
Individual children may still be contacted by healthcare professionals to present to Temple Street to be seen in specific circumstances. We can still arrange for this when it is necessary, so contact us as needed.
Frequently Asked Questions
- Are young people with spina bifida more at risk from COVID-19?
The short answer is we don’t know for sure. Because this virus is new, it is still unclear if having spina bifida (or its complications) places individuals at increased risk of worse illness should they become infected with COVID-19.
In general, children thankfully seem to have less severe illness than adults. However, some children in other countries have been critically ill with COVID-19. The number of deaths in children is extremely small worldwide.
It may be the case that young people with chronic respiratory (breathing) problems are at increased risk of being more unwell with COVID-19, should they become infected. The HSE currently advises that children who may be at risk of more serious illness with COVID-19 “be extra careful in watching out for symptoms, and strictly follow the advice on good hygiene and hand washing” as outlined here.
Hand hygiene advice is available here.
People with disabilities may also be at higher risk of being infected with COVID-19 in the first place, for a variety of reasons. For example, hand washing may be more difficult, social distancing may be challenging due to care needs, or young people may have an increased need to touch things for physical support in standing or transfers.
You can reduce the risk of COVID-19 infection by following HSE advice, and seek medical attention if you are concerned; your child will be looked after.
- What do I do if I think my child has symptoms of COVID-19?
If your child has symptoms suggestive of COVID-19 infection (see here), please follow the HSE guidance for arranging a test. If you are concerned about your child, please seek medical attention as you normally would either from your GP, local hospital, or here in Temple Street.
If your child has symptoms suggestive of COVID-19 infection, a swab may need to be taken. This link contains an explanation for children about coronavirus and the how the test is done.
- What do I do if I am concerned my child is unwell?
Please seek medical attention from your GP, local hospital, or here in Temple Street. This applies whether you are concerned about coronavirus or something completely unrelated like a urinary tract infection, VP shunt problem, pressure area, or something else.
Most people with COVID-19 recover without needing hospital admission, but do not hesitate to seek medical attention if you are concerned about your child.
Children may be accompanied by one guardian only during admissions at present. Guardians who have confirmed or suspected COVID-19 infection, or symptoms suggestive of this, should not visit Temple Street.
Guidance for visiting Temple Steet is available here.
- Is there any advice on how to talk to children about COVID-19?
- The British Psychological Society have this helpful advice about talking to children about illness, mindful of their developmental stage.
- This free book is illustrated by the illustrator of The Gruffalo, and explains coronavirus to children in simple language. The text was prepared with medical input.
- The HSE have prepared this resource to explain coronavirus to children, and this one to explain the process of going to a test centre.
- Royal College of Paediatrics and Child Health have prepared this child-friendly guide.
- What can I do about anxiety and stress?
This is a very stressful time for everyone. Please remember to look after your mental health, and that of your child. Mental Health Reform have prepared some helpful resources, available here.
Sheffield Children’s Hospital have produced this “Healthy Minds” COVID-19 advice; they also prepared this Hibernation Pack to help manage the difficulties that arise when you’re cooped up inside for a long time.
Try to maintain some routine in relation to fun activities, physical activity (for you as well as your child!) and therapy routines, if you can. Don’t be too hard on yourself if this is challenging to do in practice.
- Where else can I go for reliable information on COVID-19?
There is a lot of misinformation circulating about COVID-19. The following websites are trusted sources of information:
Please note that COVID-19 is managed differently in different countries. Organisations in other countries have produced guidance which may be helpful (some of which we are sharing here), but always remember to follow local HSE guidance in relation to social isolation, hygiene, arranging for COVID-19 testing and seeking medical attention.
7. Any other useful links?
- Our colleagues in the Crann Centre have prepared some helpful guidance on keeping equipment clean in the context of COVID-19.
- Likewise, our colleagues in Spina Bifida Hydrocephalus Ireland have prepared useful information regarding financial supports for families.
- The HSE have prepared this general advice for families of children with disabilities in relation to COVID-19.
Keep in touch and take care,
The Spina Bifida Team,
Children’s Health Ireland at Temple Street
*Posted April 9th 2020, and accurate as of then.